The dogs in my life part one

Buster the very first dog in my life. He was my paternal grandparents dog who I adored.

I know I promised when I first started blogging again earlier in the year that I would feature the dogs more in my posts and I realised this morning that I have been a little remiss in my duties. People enjoy my posts but secretly I think they feel a little cheated when I don’t include the mutts latest adventures!

So for those of you who are new to my blog or for those of you who are longtime readers I thought I would devote a couple of posts to them over the next few weeks so that I can fully explain about how the dogs came into our lives and what havoc they wreak – in a good way!

As a child our family dog was an orange and white cocker spaniel named Chas. I wanted him to be called snoopy but was overruled, I think Chas suited him better than snoopy ever would. Chas came from a farm and as we didn’t own a car at the time my mum and sister were driven by a neighbour to pick him up. Dad and I walked the two miles to the local shops to pick up dog paraphernalia including his collar and lead. I remember being very jealous that my sister would get to see Chas first and felt cheated. I must have driven my dad mad with my whining during the walk to the shops and back, although I don’t remember him telling me off but patiently explaining how important my job was today choosing the items for our puppy.

My Grandad and me with Chas at Aberdeen Beach

I remember when Chas came home he was riddled with fleas, my mum placed him on some newspaper in the kitchen, spending ages getting them off him. I can’t have been much more than 5 or 6 years old but that memory is pretty vivid. I also remember he was fed the brand “Chunky”, a tinned food that smelt almost as bad as Chas’ farts after eating it. Back in the early 1980’s we did not seem to be as focused on dog nutrition as we are now. My dogs have mainly eaten a premium dry food, only receiving a premium wet food when Mollie was pregnant as a way to get her to eat more.

Chas was an absolute bugger of a dog, he was an angel for my dad and I but led my mum a merry dance. As an uncastrated male dog his favourite trick was to run away from my mum for hours at a time, only to return home after he had satisfied his male urges. I remember sitting in class at school one day and looking out the window only to see my mum running up the hill towards the playground in pursuit of Chas who had decided to pay my sister and I a visit at primary school. As I am writing this I have realised stubborn dogs are going to be a bit of a feature in these future posts.

Unfortunately Chas had a nasty temper, he only liked to be petted by one person at a time and he preferred my dad or me over my sister and mother. This would have been fine but my dad worked away from home for weeks at a time. Chas would have been put down these days as he bit both my sister and I. Eventually my parents re-homed him with my mother’s father. Chas was much happier there, going for massive walks three times a day and having no kids around to annoy him. Sadly Chas died unexpectedly from cirrhosis of the liver at the young age of 7 and from the time that until I was 16 there were no dogs in our family home.

When my sister was around 14 she contracted a case of the flu from which she never recovered. She couldn’t go to school and was bed bound for many years. My parents decided to get her a dog, so Sophie the Yorkshire Terrier came into our lives. She was gorgeous and tiny but unfortunately she left us all too soon. Sophie passed away from an allergic reaction to anaesthetic when she was being spayed. It was a one in a million tragic event, it hit us all very hard, my sister most of all. The next day my mum tracked down a lady who was selling Yorkshire Terrier pups and so Josh and Connie came into our lives. Josh was a stubborn old bastard to be honest. He hated having a bath and you only had to say the word and he’d dive under the nearest available bed  trying to take chunks out of anyone who attempted to remove him from his hiding place. 
Sophie, me and my sister
Connie and Josh

When I got my first home, it was a pretty solitary existence. From the August to the November I lived in a bed and breakfast paid for by the company, whilst I waited for the mortgage to go through on my flat. I was living alone in a new town, holding down a new job. When my front door shut at night I had no human company until I went back to work the following day. I had been joking with my parents that I needed a cat or a boyfriend. Against the odds I ended up with a boyfriend (I’ve never really been a cat person), having been single for the three years prior to that.

OK so I found a picture of me with a cat!

The flat was leasehold, the terms of the lease expressly forbade pets of any kind. My then boyfriend (now husband) and I liked to live dangerously so we bought a hamster and named her Tubbillina or Tubby for short. Tubby was tame within a day loving nothing more than running around our flat in her ball. She was an ideal pet for us being nocturnal, as I was out all day at work. Hubby worked twilight shifts, getting home around 3am each morning when Tubbys activity levels were at their peak. A more worshipped Hamster you will never find.

Hubby had never grown up with dogs, Josh and Connie terrified him, even though they were tiny. Over time though his confidence grew, when we visited my family we would pack the dogs up in the car and take them for walks on Dartmoor. He really began to like having dogs around and vowed whenever we moved into a house we would get a dog.

We always said we would would have a small dog, we didn’t want a big dog as hubby was still nervous around anything larger than a west highland terrier. All that was to change when through work we met a couple who bred Weimaraner’s. Neither of us had ever heard of the breed before and were intrigued. We went around to meet the dogs and were terrified by the size of them. Our friends owned five of them 3 bitches and two dogs and they were enormous!

One of the bitches was pregnant and our friends said that we could have one of the puppies. I then spent every waking hour reading up about looking after dogs and Weimaraners. Travis was born on October 26th 2003 two days before we moved into our new home. We got to see the litter when it was a few weeks old and later we were the first people to choose which pup was going to be ours.

Travis chose me and from the minute he came home on the 13th December he was my dog. Travis had us over a barrel, Weimaraner’s I now know are not a dog for the fainthearted or inexperienced dog owner. They have a unique stubborn streak and are too intelligent for their own good (or their owners).

Travis

Travis was a beautiful dog if a little badly behaved. He never caused any of the destruction our other Weimaraner’s have caused, the most he ever destroyed was a copy of the Yellow Pages. He was a terrible thief though, I will talk about that in another post. If it wasn’t nailed down Travis would steal it, food including other people’s picnics, other dogs toys, Marine Corps radio packs just to name a few. Travis was well-known to the Marines who trained on Woodbury Common where we walked him and not for good reasons.

In 2005 Mollie (Travis’ sister) joined us. I had my heart on changing her name to Pixie when she joined us aged 11 weeks however she had been answering to the name Mollie for a few weeks it seemed cruel to change it. Travis was not impressed at this new pup joining us. He stared at her all the way home in the car as by then our friends had moved to Cornwall.

Mollie had not been a planned purchase. Up until two weeks before we got her we had never even discussed getting another dog let alone another Weimaraner. It was all just chance again, hubby and our friend had been to watch a football match when “K” mentioned that from the last litter they had one bitch left and they were thinking about keeping her. The person who had been due to buy her house sale had fallen through and a houseboat was not a safe environment to bring a puppy to live. Later that day hubby met Mollie and it was love at first sight. When he arrived home later that day all he could talk about was Mollie this and Mollie that.

A week later we drove down to Cornwall to meet her taking Travis with us. Travis played with Mollie but didn’t take a massive interest with her preferring to play with the other adult dogs. Travis and then later Mollie were always immediately taken back into the pack with no problems whenever we visited our friends and it was nice to be able to go out somewhere we could take both the dogs and not be scared if they made a mess or were naughty. Our minds were made up on meeting Mollie that we would take her home.

For four days after Mollie’s arrival Travis ignored her and sulked with me. Hubby took a week off work to ensure she settled in with me taking the following week off work. However Mollie has only had eyes for hubby in the same way Travis only ever had eyes for me. It was really nice for him to finally have his own dog, Travis loved him but it was me he worshipped and it was the same with hubby and Mollie.

Mollie and Travis a few days after we brought her home.
Next time how Frankie and Willow joined us.
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Things I now can’t live without

Since getting sick my world has changed in ways that had I not been ill it never would had. Gone has my desire to fill my home with the latest material whim – just as well because I had expensive tastes and did not have the budget to indulge it.

My home is now filled with things that make life easier or more comfortable for me. Design is very important, labels no longer are. This principle extends to clothes, shoes, household appliances  all manner of things. Comfort and ease of use are paramount when your manual dexterity goes. So I thought I would compile a list of things that I can’t live without should the zombie apocalypse come or should I be sent away to a desert island. I would be screwed on both counts anyway due to their being no electricity to power some of these items.

Disclaimer: I am not being paid by any company to endorse their products. These are simply the ones I use and will receive no financial reward for mentioning them on my blog.

Eye mask collection.

Since getting sick I have found eye masks brilliant for when I want to sleep during the day. My favourite one is the F Off one as this usually lets people know how I am feeling should they wish to try to disturb me. Both of these eye masks were bought for me by my sister. It’s very important when buying an eye mask that you try it on as it does need to be comfortable. If I have ptosis or sinus pain I can’t wear the F Off one as it feels too tight. The lion mask is ideal in these situations as it is quite loose. It’s not as good as the other eye mask for keeping the light out but it works well enough. They are great for when I have a migraine that makes me light-sensitive. So if you have never tried an eye mask they are well worth a try. The F Off one can be bought from Amazon in the UK – I am sure other retailers will sell it also!

 

 

Wrist splints and arthritis gloves.

 

I have had problems with my wrists / fingers causing me pain on and off for years, even before my health took a turn for the worse back in 2007. I find if I have done a lot of writing or anything where the movement is repetitive I end up with wrist / finger pain. I pop these splints on and find they are very effective in holding my wrists in a neutral position and thus resting my whole hand. I did own a black pair of splints a few years ago and that was a massive mistake. I was constantly having to clean the dog hair off them! With having three dogs the amount of hair they shed can be quite impressive. My black pair ended up being re homed with my parents. Do shop around for splints as prices vary wildly, also make sure you order the correct side as in a left brace for the left wrist. Make sure you get someone to measure your wrist for you so you can buy the correct size. A splint really needs to be comfortable and not rub around the base of your thumb as you will end up not using it. 

The gloves also featured in the photo are of my arthritis gloves. Due to Dysautonomia my hands get very cold, my fingernails turn blue with alarming regularity. When my hands get cold I suffer from joint pain in my fingers. During the winter these gloves are an absolute boon. They are thin enough that you don’t lose whatever manual dexterity you have, however they do keep your hands warm. When my husbands psoriasis had a bad flare up earlier this year I got him a pair of these gloves to wear whilst he was at work to protect his hands. They really are very good, they were bought from a famous online retailer named after a large rain forest! 

 

Sunglasses collection

I have developed light sensitivity since becoming ill. I was always light-sensitive even as a child any sunlight at all would leave me squinting and going for my sunglasses. It’s not just the light sensitivity though with suffering ptosis I feel very self-conscious when I am out and about so the sunglasses hide that. I have different levels of tints for different times of the year. Normal sunglasses on a cloudy winters day are far too dark so I wear normal glasses with tinted lenses that have no prescription – the green ones. My red / pink-tinted glasses are for when I have to spend a lot of time using the computer. I find the wave length of the light can leaving me feeling like my optic nerve is being burned! So the red lenses just drop the light levels down. My Gucci sunglasses were purchased before I became ill and they have the darkest lenses of all my glasses. I have another pair which I forgot to photograph, they have a much bigger lens so that if my eyebrow is drooping through ptosis the size of the lens covers it up nicely.

 

 

Wedge Pillow

The photograph above is of my wedge-shaped pillow. On days when I am stuck in bed feeling faint this is brilliant, it has one thin end that you can sit just under your bum and then the thicker end you can put your legs on and it raises you legs up for you. I was very lucky that my mum happened to spot it when she was shopping in a German based supermarket that is popular in the UK and got it at a bargain price. It is quite large to store away when it’s not in use but hubby always manages to get it in the airing cupboard……somehow!

 

In the photograph below is a little smorgasbord of items that I use pretty regularly. The lap tray that everything is balanced on is a brilliant item. When I first got ill my friend Ellie suggested I got one so that I would be able to use my laptop whilst in bed. Its not only great for using my laptop but when I am too sick to go downstairs for meals it also serves as a dining table. It is easy to wipe clean and the legs fold away so that it can be stored next to my bedside cabinet. It’s also nice and light which means I am usually able to set it up without help.

The large red item on the right of the picture is my heat wrap. I have a tendency to burn myself when I use hot water bottles. If I am unwell and hubby is out or at work I can just flick a switch and I have instant heat on my back or stomach or whatever else is hurting me that day. I did have a blue one but unfortunately it died this year. It was one of my most used items and I went a few months before I found something I felt would replace it. I like heat wraps and hot water bottles to be very hot, luckily my heat wrap comes with three settings and it automatically cuts out after a set period of time. This new one can also be washed which is an added bonus.

I have spoken about my shower cap before on my blog many years ago and this is the same one. I love my shower cap and although many people may feel it is rather old-fashioned, it saves me so much energy by not having to wash my hair. I can’t go in the shower without it if I am not going to wash my hair as a drop of moisture and my hair is a mass of curls. I like my hair straight so avoiding frizz is good. I don’t like having a wash at a sink, if I am not well enough for a shower I will simply wait until I am, unless I am having visitors. What I haven’t taken a photograph of simply because I forgot was my shower stool. I love my shower stool as it means I can have a shower without standing. Much safer for me!

I also use dry shampoo when I have been able to wash my hair for a while. I am sure there are many brands of dry shampoo this is just the one I use. You do have to be careful that you don’t spray it too close to the roots of your hair otherwise you end up looking like you have gone prematurely grey. It freshens your hair up whilst getting rid of the grease so you don’t feel so grotty when you aren’t well enough to wash your hair.

The last item on my lap tray is a shower gel by Burts Bee’s. My skin has become incredibly dry and sensitive since becoming ill. I have to be very careful what products I apply to my skin as I will have an allergic reaction, even to things I have used for months. This shower gel doesn’t foam up but leaves your skin feeling clean and it smells heavenly. As it is only me that uses it a bottle of this (although expensive) will last me several months. I really couldn’t live without this.

 

Lap tray, shower cap, heat wrap, dry shampoo and shower gel.

 

V-shaped pillow, boudoir cushion, Russian Doll hot water bottle, Babushka hot water bottle.

 

The last photograph contains two of my most treasured possessions my hot water bottles. The red one was a Christmas present from Ellie who must have searched high and low to find me a Russian doll hot water bottle cover and the pink one is a Babushka hot water bottle cover I received as a present from my sister. I don’t think a day has gone by in the last 6 months that I haven’t used them, it’s actually probably longer. Heat is the only thing that my chronic pain responds to. At least if there was a zombie apocalypse I should in theory be able to get my hands on some hot water!

At the front of the picture on the left hand side is one (of two) boudoir cushions – they match my bedroom curtains. They were initially bought purely as decoration but they are just the right size to pop under a sore knee or to prop my head up when I want to watch tv in bed. I am amazed at how much I use them. Just as well because they weren’t cheap.

At the back of the photograph is my V-shaped pillow and this is also used daily when I am resting in bed. I have rest periods every day and the v shaped pillow helps keep me propped up comfortably. Its also great for when I want to read a book. If you put it around your middle whilst lying in bed you can rest your book against it saving your wrist joints. I find holding a book is very hard as my wrists are quite weak. I found this out by accident one day and its been an enormous help to me, it has enabled me to continue reading when I had almost given up.

There were literally too many things to choose from when considering writing this post. I had to think very long and hard about what things I used on a daily basis and what was nice to feature but didn’t get used an awful lot. Everything featured in this post gets used heavily. I haven’t included any modern technology but of course I couldn’t live without my mobile (cell) phone, my Nexus 10 (tablet computer) and my chromebook. I am very lucky that I am able to afford to buy these things. Without them I would be very isolated as social media, text messages and phone calls keep me connected to the outside world.

I haven’t included the adaptations that have been made to my home such as grab rails or an extra banister going up my stairs. Nor have I photographed my chemical toilet or numerous walking aids simply because they aren’t very glamorous despite the fact they too are used daily.

I just wanted to give you a little peek into my world and find out if there was anything that you would also find useful. As always thank you for reading xx

Generic v Brand name medications

***Warning graphic info regarding  my menstrual cycle***

Here in the UK we are very used to being prescribed generic rather than brand name medications. It is an easy way for the NHS to save money and I am all for that. I always felt somewhat bemused when I saw on forums people posting their complaints (normally in the USA) about their insurance companies only paying for generic medications after they had been on the brand name drugs. I was always under the impression that the generic versions of the brand name drugs were identical. Oh how very wrong I was.

A few months ago the contraceptive pill that I have been taking since around 2009 was suddenly changed to a generic version. I had been aware that the changeover was likely to happen as it had been mentioned on various UK forums that women had their prescriptions filled with this new contraceptive pill. When they had enquired with their doctors they had been told that C (how I will refer to the pill) was no longer in production and the new drug D was now being issued in its place. Apprised of the situation when my repeat prescription was filled with D, I made no enquiries myself figuring that I would be told the same as everyone else. If I was being given D instead of C I assumed it was the same thing just a different brand.

Initially there were no issues with the new contraceptive pill however after two months problems began to arise. After three months the side effects of the new contraceptive pill were unbearable. As I am too sick to visit the doctors at the moment (with visiting the physio as well I am exhausted also) and I felt it wasteful to request a home visit which I couldn’t guarantee would be with my own doctor, I decided to write a letter. I find phone calls with my GP can be rushed purely down to my doctors workload. With a letter I could inform my doctor of all the problems I have been having so that he would be in a better position to help me. I have copied and pasted the letter below however some details have been edited to spare your blushes.

 

Dear Dr,

 

I am sorry to have to contact you via letter but it is probably better for me to give you more detail than can be given in a phone call, when I know that you are under enormous time constraints. I will give you fair warning that this is about my menstrual cycle, so if you are eating you may wish to finish before continuing!

Recently you changed my contraceptive pill from C to D . Unfortunately D has been an absolute nightmare. I am now having periods, which I haven’t had since being on C. These periods are without giving you too much gory detail extremely painful. I am bleeding for around 10-12 days. When I have had periods in the past the longest I bled for was 5-7 days.

I am also noticing that I am having increased joint pain around the time of my period which would be down to the change in hormones, it is causing my tendons, ligaments etc to become more lax. The surge in hormones is also increasing my Dysautonomia symptoms and I am fainting and having more pre syncopal episodes now that the pill has been changed.

I have looked online and have seen no reports as to why my contraceptive pill has been changed from C which has worked effectively for me for many years. Please can you change me back to C? If this is not possible then I think I will need to see gynecologist. I do not want to have the contraceptive implant due to my poor healing and scarring (due to Ehlers Danlos Syndrome) and I also do not want to have the M Coil fitted as I find smear tests painful enough, without the added fun of trying to get a coil inserted.

My periods have been painful from the age of 11, they are not only painful but they cause me to vomit and have diarrhoea. As a child I was told that the pain would go away when I had a baby. Not very helpful when like me you have zero maternal instinct and sex is illegal at age 11. I have lost  days every month  from school, then university and then my workplace due to the agonising pain from my periods. It is embarrassing having to say to people they can’t pop by and see you because you are stuck in bed with horrific period pains. It sounds like something from the dark ages.

I have tried lots of prescription painkillers over the years nothing worked, even on morphine my periods are still painful. The  pain goes through my buttocks, down  the backs of my legs and there is pain throughout my abdomen (basically belly button down). This pain happens all day and all night until the bleeding stops and can begin as many as three days before my period starts. Sometimes the pain is so intense it is contraction like and I can time them as come and go – usually 3 minutes apart. I have experienced a lot of pain in my life and period pain is the worst pain I have experienced by far. Purely because of its duration and the fact it is unrelenting.

This new pill is making my moods swing, I am tearful one minute and angry the next. Its like I have PMT all day everyday. I feel like I am having a bout of the blues, it’s not depression but I feel like I can’t be bothered with anything and feel great sadness. I worry that continuing with this pill will lead me into a depressive episode which I really don’t want.

I have sore breasts for two weeks out of the month. They are so sore I can’t even stand someone brushing up against me by accident or wear a bra. To be blunt this new pill is making my life a misery.

If I can’t have C on prescription then something has to be done about my periods. I know painful periods are part of Ehlers Danlos Syndrome but I am not prepared to put up with the pain when it is not medically necessary. As I have said to you before I will jump for joy the minute any doctor tells me I can have a hysterectomy as I am sick to the back teeth of my uterus. This probably seems melodramatic but I assure you I am not kidding. I really can’t stand this.

I had to write to you rather than book an appointment as it would take at least 20 minutes for me to stop crying when I started talking to you. This new pill has me on the verge of depression. I am starting to question whether it is the pill or if I have started the menopause? I know my days of being on the contraceptive pill are numbered due to my age. So something will have to be done now or in a few years regardless. Sorry to have rambled on but I wanted to put you in the picture of why I want / need  to be put back on C.

 

My doctor rang me the day he received my letter, I wasn’t expecting such a prompt response. He told me was very sorry that I had been having such a torrid time of it since being placed on D. He informed me that D was the generic version of C and theoretically shouldn’t make such a difference but he was well aware that some people do find generic versions of brand name medications produced side effects that were not present when using the brand name. C’s production had not been stopped but doctors are advised to issue the generic medication wherever possible, a prescription for C would be at the pharmacy the next day for me and my notes would be amended to show that I must be prescribed C not D in future. He told me that he would probably get into some trouble for prescribing C instead of the generic version however he had two pages of reasons why I couldn’t be prescribed the generic version thanks to my letter.

I was so happy I could have cried when he told me that C was still in production and that I could have it. I had been an absolute mess on the generic version. I have been back on C for just under two weeks and the difference is amazing. I feel like me again, the sadness has gone, my joint pain is back to its normal level. I just feel more human again and hubby is no longer getting his head bitten off at every available opportunity. Having just chatted to him about my blog post he told me he can’t believe the difference in me already.

Before I experienced the issue with having a generic medication instead of the brand name I never gave the complaints on forums much credence. I like many other people assumed that generic meant the same. I know now that it was a huge mistake I am just really pleased that my own doctor appreciates that some people need the brand name medication. I was lucky but what about those patients who aren’t?

I didn’t get my request for a hysterectomy, I will keep trying for that one. I even offered to donate my uterus for transplant to someone who wants a child – like the stories that have been on the news recently. My doctor told me that our part of the country isn’t set up for that yet. I will be at the front of the donations list when it is. As I stated in my letter I really am sick to the back teeth of my uterus and all the problems it has caused me for the last 30 years.

I do get angry when menstrual problems aren’t taken seriously. I really do believe that if men had periods the situation would be oh so different. Even women doctors can be dismissive of the issue if they have never experienced the discomfort of bad menstrual cramps. It is a serious issue for many women and I sincerely hope any young girls who are having issues aren’t given the advice that I was 30 years ago that having a baby will solve the problem. Given my family history, I can tell you that even after the women in my family have given birth they still have horrific period pains.

I know given my status as a barren old maid well not quite, it’s actually mine and hubby’s choice not to procreate, the menopause fairy should be visiting me early. It is something that fills me with dread because again female family history is not on my side with that one either.

Oh the joys of being a woman!

 

Unsolicited Medical Advice

  ***Sarcasm alert***

Nothing is guaranteed to get me raging more than unsolicited medical advice. I can be calm and happy one moment yet once I am on the receiving end of someones latest theory on what will get me well, I can be incandescent with rage in around 60 seconds. It’s not the sentiment of the bearer that I question, it’s the very little knowledge of my condition that they possess that irritates me.

Unsolicited medical advice is just that unsolicited. Unless I have asked a direct question regarding your opinion on or suggestions on what would make me feel better or would cure my condition then just don’t. I know myself in the past I have offered up to others what I have considered to be pearls of wisdom without them asking for it. However now having had some time being on the receiving end of countless suggestions all of which were unsolicited I can tell you it’s infuriating. Now I refrain from doing it because I know that it is not at all helpful. Sending me links to new medical papers on research into my condition is not the same as unsolicited medical advice. That is very helpful and greatly appreciated.

Over the last 7 1/2 years I have all sorts of helpful suggestions, from being told that I was being punished for a sin in my past life and needed to pray harder to gain recovery or to being told to eliminate stress from my life. Eliminating stress from any ones life is good thing however it’s not really been shown to be a cure for any illness that I am aware of. I have been informed that removing the artificial sweetener aspartame from my diet would be the magic bullet, I had several emails about that one when it was doing the rounds. I have been told that I just needed to get outside and exercise. That one hurt me quite considerably as out of all the things I can no longer do walking my dogs is the one I miss most. Anyone who suggested that one clearly doesn’t understand my illness or the sense of loss I feel about being no longer able to do so many things.

We all in our lives have provided unsolicited medical advice to someone be it a partner, a family member or a friend and when we have given them this advice we have done it from a place of love. We give them this advice because we truly want to help them feel better and get rid of whatever illness is ailing them. It is not done to hurt them or to make them feel bad about themselves. I try to remember the sentiment behind the persons advice when it is issued. Sometimes it is really hard though because issuing advice for a cold is a world away from issuing advice about a long-term medical condition. 

People with long-term medical conditions usually have more knowledge about their conditions than a lot of the medical personnel that they will come into contact with. Those with long-term medical conditions know how to manage their condition what medications work and what doesn’t. So what irks me is when someone who has zero knowledge of your medical condition decides that because they have read, seen or heard  a nugget of information that they are able to tell you what to do to get better. A situation that has long eluded the medical profession.

A piece of advice that tipped me over the edge recently was received from someone who should have known better. A few weeks ago my phone beeped to let me know I was in receipt of a text message. I had a look at the message and just growled. It was from a friend who works within the medical profession who had sent me a link to a page on BBC News website. Without even checking the link I text back “Please tell me this isn’t about the girl who went Vegan and magically cured her PoTS?” I knew it was without even looking, as this “story” had been doing the rounds on various forums, where there were several Vegans and no, they hadn’t been cured despite their dietary choices. What we had learnt on the forums was that said person who cured her medical condition, fell into the age group where you can grow out of PoTS and she also had a cookbook being published so hence the flurry of unhelpful newspaper articles about turning Vegan as the cure for PoTS. My text message received a rather sniffy response, the tone of which made me feel like because I hadn’t decided to become a Vegan immediately then I really must not want to get well.

There were a lot of things about this text conversation that annoyed me. Some weeks previously I had informed this person I had been diagnosed with spinal arthritis and received no response. As this person was now moving into the outer orbit of our both mine and hubby lives I didn’t take offence. Sometimes friendships change and that’s the way of life. Secondly this person works within the medical profession in a highly paid and highly responsible job. Thirdly this person has known me for nearly 20 years and in all that time I have been vegetarian, they know this. I know vegetarian is not vegan – I have been vegan in the past for about 6-10 months. Finally, this person is supposed to be a person of science, as good as a balanced vegan diet is for you where is the medical evidence to back this woman’s claims up? I didn’t argue I just ended the conversation pointing out that I didn’t just have PoTS anymore that I had in fact been diagnosed with severe autonomic nervous system dysfunction and did they have any dietary suggestions for that one? Funnily enough I haven’t heard from them since.

I don’t know what made me angrier the suggestion that becoming a vegan would cure me or that when I rejected the advice I was made to feel like I wasn’t doing everything in my power to get well. It’s not the first time that I have been “accused” of not wanting to get better, when I have rejected someones advice. That’s why when I receive messages / emails or have conversations with people when they offer advice I try to smile and say thank you rather than get angry about it. However due to this person’s medical background I felt extraordinarily let down by the fact they had even sent me the link without first checking out its scientific validity.

Again I don’t doubt this persons sentiment was anything other than provide me with some advice that he or she felt would help set me on the road to recovery. It is just  on that Sunday morning I wasn’t able to see that and responded as I would have done 7 1/2 years ago. I learnt through trial and error when people were offering me advice it was better to smile and nod rather than to dismiss their advice out of hand as hard as that maybe. 

So having sometime this week to think about all the unsolicited medical advice I have received over the years I thought I would share some with you;

1. Pray harder / more / start  praying – this one is always a little difficult for me as I hold no religious beliefs. It is also quite insulting when you think about children who have life limiting illnesses would you honestly impart this advice to the parents or imply that their lack of praying is the reason why their child is sick? It just seems a little insensitive and a person’s religious beliefs are private between them and their God.

2. Eliminate stress / take up meditation Everyone wishes that they could eliminate stress from their lives, no one has ever said “please give me more stress”. So when this little pearl of wisdom is thrown my way I do have a little chuckle to myself. Stress is all around us its part of the modern condition. There are things that you can do to reduce your stress. I like my morning Pilate’s session that is done in complete silence as I can not think about anything but the exercises I am performing. It does quieten down my mind I can’t argue with that however it is yet to cure my medical conditions.

3. You need to get out more – I can’t argue getting out of the house lifts my spirits and makes me feel part of the human race. However getting out of the house will also land me in bed for several days just due to the over stimulation of my senses and the physical energy required to keep myself propped up in my wheelchair. When I can, I take a short drive with my husband for a change of scenery and some fresh air whilst he walks the dogs. What people don’t realise is to achieve those 30 minutes out of the house I have to rest all afternoon. I wonder what illness getting out more is known to cure?

4. Get some exercise, you feel ill because you’ve let yourself get so deconditioned – ha ha ha ha ha! OK I will admit taking up Pilate’s has helped me loads in the last 6 weeks. However the type of exercise that the people who suggest this to me mean is going out for a brisk walk along the seafront etc they do not mean lying on the floor for 20 minutes performing Pilate’s.

5. If you lost weight you would feel better about yourself – I have no argument with this one. Being a healthy BMI is better for you ( and yes I am fully aware of the arguments surrounding the fact that the BMI measurement needs updating as it’s not completely accurate), its kinder to your joints and if you are overweight losing weight can make you feel fab. However when it is said to someone who has gained weight as a side effect of medication that they can’t stop taking it’s not at all helpful. I wonder if you had a friend who was overweight but healthy you would have the cojones to suggest that? Feeling better about myself suggests that the person believes that my condition is psychological and not physiological which is not the case.

6. Change your diet eat Paleo, Fodmap, vegan, gluten free, raw food, clean food etc etc etc – I can’t argue with the fact that many people with EDS and PoTS have had great results in reducing their gastrointestinal symptoms when they have changed their diet. People with autoimmune diseases such as Myasthenia Gravis are encouraged to go gluten-free to help manage their condition. Diet does play a much bigger role in the body than current medical thinking appreciates. I believe as long as you are eating a balanced diet as free from convenience foods as you can you are doing a great job. I have tried going gluten-free it made absolutely no difference. As I can’t digest raw vegetables or fruit with horrific stomach pain I will not be trying the raw food diet again. I have been thinking about going vegan for a while now for ethical reasons not health reasons but I am currently too sick to do anything about it. I do say do whatever you can manage diet wise but do not become a diet zealot / bore! However don’t suggest things to me that I have already tried!

7. You need to adopt a more positive mental attitude – My only answer to that one begins with F and ends with F. Moving on!

8. You need to take up a hobby –  Oh OK so because you don’t understand the world of blogging you are automatically assuming that it’s not worthwhile? See above for remainder of response.

9.Have you tried X,Y,Z herbal supplement – I am not against herbal medicine that has a proven track record (or large amounts of anecdotal evidence ) such as evening primrose oil for PMS or Black Cohosh for the menopause. I use peppermint tea whenever my stomach is playing up (pain or wind) as I know it works for me and many people on the forums I am part of use liquorice to boost their blood pressure. What I am referring too are the people who know zero about your condition but insist that a friend of a friends uncles, aunties , sister cured themselves of a, b, c, by taking this supplement. Why they think you have the same as their friend of a friends uncles, aunties sister is beyond me as if you ask them to name your own medical condition they wouldn’t have a clue. 

10. You are paying for the sins of a past life and need to be forgiven – I saved this one until last as it is a personal favourite of mine. If indeed I am paying for the sins of a past life what am I supposed to do about it? It also brings the question to mind what makes the bearer of this news so special that they aren’t being punished? I could go into a whole anti religious rant but I am respectful of other people’s beliefs I just wish they could be respectful of mine.

I have probably had quite a few more than I can currently remember that they are the ones that stick in my mind. I am sure over the years to come I shall be in receipt of many more!

Physio Update

For those of you who don’t follow on Facebook, plus for those of you who do and want more details I thought I would provide you with an update on how things are going.

I have been religiously performing my physio exercises (Pilate’s based) for over 5 weeks now. Last week I had my first follow-up appointment and Kate was impressed. I have mastered the technique of keeping my pelvis still whilst carrying out the exercises, so much so Kate my physiotherapist believes I could have a tray full of drinks on my abdomen and not spill a drop! I had been secretly fretting that I hadn’t been performing them correctly – you know me I like to worry about the smallest of things, so it was good to know that I had getting it right.

The difference in my back pain has been phenomenal. Before starting physiotherapy and seeing the spinal surgeon I had been confined to bed for weeks due to the pain. Even in bed I couldn’t get comfortable. All I could do was apply hot water bottles and take copious amounts of pain medication. I was thoroughly miserable and there were  more and more things I was simply unable to do due to the pain. 

I am probably one of those most sceptical people you could ever meet in regards to physiotherapy. I have seen physios on and off for years, only two of them have been half way decent and this was years before I had the diagnosis of Ehlers Danlos Syndrome. 

Other than the two lady Physios who in the past treated my severely sprained ankle and a case of Plantar Fasciitis in both feet, my experience of physiotherapists hasn’t been great. One was so bad in 2011 I just stopped attending. She claimed to have specialist knowledge of EDS, that may have been the case but she had no knowledge of Dysautonomia and what she was asking me to do was positively dangerous. Asking someone who regularly blacks out due to standing to increase the amount they walk around by 10% every week clearly shows either a) she doesn’t understand dysautonomia, b) doesn’t believe that I would faint, c) simply doesn’t care and uses a one size fits all approach or d) does not have the specialist knowledge she claimed to have because walking causes me such a significant amount of pain . My gp actually tried to refer me back to her this year when I told him I was having private physio. I told him exactly what I thought of her methods and he replied “That’s a no then?”.

Kate has been honest from the start and said she knew very little about Ehlers Danlos Syndrome or Dysautonomia and would be led by me, she would conduct research to find out the best way to treat me. However I having heard all that guff before I didn’t really believe her and left the first session thinking I would give the exercises a go but wasn’t expecting any massive improvements.

By the time my second appointment came around last week the results were quite  astonishing. I really wish that I had taken measurements of my stomach before commencing the exercises as my tummy is now the flattest it has been in years. However that is just cosmetic, the results on the back pain front have been amazing. Now my back pain has not disappeared completely, nor have the muscle spasms but now instead of my back being sore for days on end the pain just lasts a few hours. The spasms can last anything from a few minutes to an hour or so which is a massive improvement because on bad days all that was needed to start a spasm was for me to move my arms above waist height. I still can’t lift anything heavier than a cup of tea without landing myself in trouble and I still have to be very careful how I move but it is still an enormous improvement. I feel like I am getting some of my life back now that the pain has reduced. I had no idea how badly the pain was affecting me psychologically.

Initially when the back pain started to ease, it happened at around week two, I just assumed I was coming out of a flare up. Once I got to week four and the improvement had been sustained I had to admit that the physio was working. Hubby told me my posture was also much improved and said “You aren’t moaning as much about your back” meant in a loving and kind way I am sure! I do find the exercises demanding even though they are below what would even be classed a beginners level of Pilate’s and they are mentally tiring as well. It is all about control, as anyone who has EDS will tell you floppy bodies are very hard to control. I need to have complete quiet whilst completing my exercises as I need to keep focused on what I am doing to ensure I perform them accurately.

Last week the physio session was very painful. Kate informed me that between our sessions she had been researching EDS and Dysautonomia and had found some more exercises she wanted me to try. However before showing her my exercise technique she wanted to massage my back and try to get the muscles on the left side of my spine more relaxed. When a physio says massage from previous experience I know its going to hurt but I also know afterwards my back is going to feel wonderfully loose. Kate had been observing my gait when I came in for appointments and could see I was holding myself in such a way that was causing a lot of tension down the left hand side of my body. She must have worked on my back for a good 30 minutes. There were some sections such as my thoracic spine and the base of my neck that were incredibly painful. The muscles did seem loser afterwards but the following day the pain in my thoracic spine was very intense and took hours to get under control.

Kate was happy with my technique when I performed the exercises and I told her how much I had enjoyed doing them. She then started showing me the next 4 exercises she wanted to introduce. Unfortunately one has had to be adapted again to below a beginners level simply because I don’t have the strength to be able to perform the exercise safely. Like many people with EDS I have weak muscles, I can not perform any exercise where both legs are lifted at the same time. I struggle with lifting one leg out straight from the knee as my technique just collapses if I don’t keep reminding myself to elevate my leg. It is frustrating for me when I think back to how fit I was and how much walking I used to do to now have so little strength in my legs. Even now after 4-5 weeks of performing the exercises I can’t increase the number of repetitions due to their weakness.

One of the exercises I have been doing since my last appointment has been to increase the mobility in my thoracic spine. I know that sounds crazy with having EDS you would think that I would be floppy and bendy all over. Kate thinks that from years of my body naturally trying to protect myself this part of my spine has become stiff which then leads to pain and the vicious cycle starts. You don’t move due to pain either consciously or subconsciously and then when you do move it is more painful. Completing this exercise has led to more pain in this area, it’s not horrific but I am constantly aware that it is there and have been having to resort to hot water bottle again. It is a little disappointing and you start to wonder if you are creating more problems. I know the muscles and joints will be sore from not having moved properly but how sore is a “good” sore and when does it become a warning sign? My questions will be answered this afternoon and I will continue with my blog post then….. 

I was very sore after my appointment yesterday, not only did Kate perform very small and gentle manipulations on my spine but she also deep a deep muscle massage on it. This was painful especially on the right side of my neck as I shrieked Kate said “You’re right-handed aren’t you?” To which I squeaked “yes” in reply. I could feel how very tense that side of my neck was it must have felt like a sheet of steel under her fingertips. I always find the process of massage quite weird as initially it doesn’t hurt too much, then the pain increases dramatically and then magically as the muscle finally admits defeat it relaxes and the pain is gone.  You can feel the way the muscle moves under her fingertips has changed because there is no more resistance its bizarre. Not enjoyable but I always feel better afterwards.

I only had a 30 minute appointment yesterday and the manipulations and massage took up most of that. Kate said I had tolerated much more than I had the week before which she was amazed at. What really shocked her was the complete change in my posture. She said my shoulders are not rounded forward anymore when I sit, I am walking better and my overall posture is now brilliant. She has found the speed in which it has happened remarkable. She confided to me that many of her patients take 3 to 4 sessions before they understand the mind-body connection needed when performing the Pilate’s exercises. What she means by mind-body connection is the ability to think of a muscle in isolation and move it in a certain way. I was pretty pleased that I was an “A star” patient and had understood from week one how important it was to concentrate on the moves. I think I have my mum to thank for that and my dad. Both my parents were really into Yoga when I was a child and would get both my sister and I involved in their Yoga sessions which always ended with meditation.

I have been adding in some Yoga moves at the end of my home Pilate’s practice purely to try and relax my spine. I have been performing the Cobra and the Cat which helps me remove any tension in my muscles after completing my Physio exercises. When I discussed this with Kate yesterday she said “where do you know about those moves? Because they are used in Pilate’s” So I told her about my parents Yoga sessions and that I had done Yoga as a child. I think initially she had been worried that I had looked these up on the Internet and thrown them into my routine. Now she is aware of my Yoga family history as it were she is happy I am using the correct technique. She has already worked out my personality is very “Boom and Bust” meaning I push myself until I collapse, hence she wants to make sure I am doing everything very slowly and not jeopardising my health.

When I was fit and well I did exercise (again in a boom and bust way, which probably sped up my eventual collapse on 31st May 2008) but I found floor work  like stomach crunches etc incredibly boring. I liked bouncing around doing aerobics or walking the dogs. I joined a gym many, many moons ago and found the machines mind numbing. I have never really liked any exercise where I wasn’t in constant motion. So I am bemused that now I am doing what I class as floor work (Pilate’s) I am really enjoying it. I like the fact it is mentally challenging and time to focus on myself. I am loving the results less pain and a trimmer figure. 

It’s not a cure for Ehlers Danlos Syndrome, I am still having frequent dislocations and hip pain, nor is it a cure for Dysautonomia, this morning I have had several mini blackouts and my heart is racing. It is just really nice after years of not being able to do things that I have found something that I can do which is safe. There is no risk of me fainting as I am lying down (well when I say no it should have been phrased there is a reduced risk). Also the fact I have a very sturdy pine coffee table next to where I complete my exercises means I can crawl over and get myself up off the floor when I finish my morning routine as I call it now.

I know Pilate’s is not suitable for everyone and it certainly should not be attempted unsupervised for those of us with hereditary connective tissue disorders where the risk of dislocation is high. I am just extremely lucky to have found a Physio who is willing to learn about EDS and Dysautonomia, who will adjust exercises when she sees I can not complete them properly rather than blunder on and make me feel like a failure like physios have done previously. I know that she is just a phone call away should I run into trouble and my calls will be returned. Most of all I am enjoying myself, which when activities are limited is an absolute boon. 

October

Travis the first time he saw snow.

 

 

I have an issue with October, I have had for the last 8 years. The first 7 days of October are fine but after the 7th October the day that Frankie and Willow (and six other puppies) were born in our spare room back in 2006 I am filled with an inconsolable sadness. Until October is over it does not go away. Some years the sadness is worse than others. I spent last Friday sobbing, the awful migraine didn’t help matters but as soon as it is Frankie and Willows birthday I know the anniversary of losing Travis is looming.

October 2006 Mollie was pregnant with her first litter of puppies. The visit to the stud dog had been a real eye opener. I didn’t realise how up close and personal it would be (make of that what you will!) and although I had read many books on the subject of pregnancy and labour in dogs, I felt very out of my depth when at 3am on Saturday 7th October Mollies waters broke all over my legs. We had been expecting it as she had been in labour since the early afternoon of the day before however seized with panic I rang my good friends J and K who had bred both our Weimaraner’s and who had been breeding them for over 11 years.

J and  K came to the rescue thank god! I was merely an observer as J and K assisted Mollie in the birth of 9 healthy puppies with Willow being the last to be born and very much the runt of the litter. Weighing over 100g (410g was her birth weight) less than all the other puppies I was filled with dread that it was highly likely we would lose her. What made the fear worse was that at the time our first dog Travis was losing his battle with kidney failure. In the midst of birth I felt as if I were surrounded by death.

Travis and Mollie curled up in an armchair. It took Travis 4 days to forgive us for bringing Mollie home. After that he adored her

 

If you have never loved a pet like it was a member of the family I suggest that you skip this blog post. If you are one of those people who can’t understand the grief people go through on the death of their faithful four-legged companion or have ever uttered the words “It’s only a dog” out loud I am afraid  this post is not for you.

Travis about 5 months old.

Travis came into our lives on 25th October 2003, his birth was announced by K as he strolled into the office at work and said “Rach you’re a mum”. I was overwhelmed with excitement despite the fact it would be a long 7 weeks until we would be allowed to take him home. Hubby and I got to see him at three days old at that point we didn’t know which one of the litter would be our boy Travis. His name had been decided one day at work sat at lunch when hubby and I agreed that we would have one of the pups from J and K’s litter. Every waking moment after that was spent researching the breed and reading books about dog training. Little did I know on 25th October 2003 how very short Travis’ life would be and despite his ill-health throughout his life, how very much I would love this dog.

Travis on Woodbury Common.

 

Travis was no angel, he was a stubborn bugger. No matter how many hours we spent at obedience training he would not do as he was told. We were lucky he was a very contented dog, he did not chew the house up although he had a voracious sexual appetite when it came to stuffed toys. He was a little demon when he was out of the house. He was selectively deaf when being recalled, refused to get back on his lead at the end of a walk and if he decided the walk wasn’t over he would refuse to come back to me when he knew we were heading back to the car. He was also a terrible food and drink thief, no cup of tea was safe in the house. You had to drink your tea with your hand over the top of the mug and no food could be left unattended. I remember being sat in the lounge one night with hubby and Travis strolled past us with our dinner not yet cooked in his mouth. He had jumped up and stolen it from the top of the stove whilst I was waiting for the oven to heat up.

 

I could write a stand alone blog about the mischief Travis got into during his short life.Presently despite 8 years passing it is just too painful to spend too long thinking about him. My eyes are red from crying whilst I write this. You would think after 8 years it would get easier but this year for some unknown reason I am finding particularly tough.

 

Travis and Mollie on holiday 2006.

It wasn’t just our food that wasn’t safe, strangers picnics were raided (if you want to know the feeling of the ground opening up and swallowing you that will do it!) and the Royal Marines who use the nearby Common to complete their basic training knew Travis on a first name basis. Travis stole a radio pack and was pursued for half a mile across rough ground by my husband and two Royal Marines attempting to get it back. Mollie and Travis also stole and ate a crate full of food that was intended to be the Royal Marines supper. I couldn’t get off the Common fast enough after that one. Despite his naughty behaviour everyone loved Travis because he was such a character. My husband and I really didn’t know you could love something as much as this until he and his sister Mollie came into our lives.

Mollie and Travis doing their favourite thing in all the world….sunbathing!

Travis was ill with an unknown illness from the age of six months. Despite various treatments, misdiagnoses and expensive trips to the veterinary hospital no one knew why Travis was so ill every 4-6 weeks. I now think I know what made him so sick and its bitter-sweet. I have a theory that Travis had Lungworm which can be picked up from infected slugs and snails. Travis was obsessed with the big black slugs that were found in abundance on the Common. I believe that he had a lungworm infestation and the reason he got so sick every 4-6 weeks was to do with the life cycle of the worms (this is me just guessing). What caused the Kidney failure was the drugs that the vets used to treat his illness. Some dogs can handle this medication with no side effects but some dogs like Travis and in turn Frankie can’t. When Frankie was given the same drug back in 2010 he started urinating blood within hours. After doing some research online about the medication due to what happened to Frankie I put two and two together and found that this drug can cause kidney failure in susceptible dogs.

 

Travis approximately 9-10 weeks old

 

For legal reasons and self-preservation I am not prepared to name the medication that was repeatedly given to Travis during his bouts of sickness. Pharmaceutical companies have armies of lawyers and very deep pockets and obviously I do not. All I would suggest is that if your companion animal is placed on any medication read the label that comes with it but also Google it, so that you are aware if there were any issues when the medication was tested. The medication used on Travis is safe on 95% of dogs however there are 5% of dogs who if they are repeatedly exposed to this medication who will develop irreversible kidney damage. Unfortunately Kidney failure is very hard to detect until the damage is very severe. By the time Travis was diagnosed in September 2006 with acute kidney failure he was given just 12 weeks left to live.

 

At the time Travis fell ill Lungworm was not well-known and some Veterinarians are still pretty ignorant about the condition with many not knowing the signs of a Lungworm infestation or how to test for it. It is only in the last few years that greater awareness of Lungworm has taken place in the UK, for more info Lungworm Aware. UK which is a national campaign trying to increase awareness amongst dog owners and Vets.

 

Travis climbing up on the garden furniture because I left a packet of biscuits there by accident!

Travis had the following  classic symptoms of a Lungworm infestation yet this diagnosis was still missed; bleeding from his nose and penis, poor blood clotting after injuries, loss of appetite, sickness, diarrhea, depression, lethargy and towards the end of his life he began to tire easily on his beloved walks. Also when he had his episodes of sickness he would spike a temperature of 104, dangerously high. Am I angry that his condition was never diagnosed? Of course I am however I am also angry that we weren’t told as his owners the risk of him being repeatedly exposed to this medication and the fact that his kidney function wasn’t monitored whilst he was on it. Travis died from ignorance and as his owner, his mum, that is what I find as hard to deal with as missing him everyday since his passing.

Mollie and Travis

Travis died ten days after Frankie and Willow were born, he was just eight days short of his 3rd birthday. When you own a dog you know that they will die anytime from approximately ten years after you get them. That’s the deal with owning a dog, you know that you will love this creature and it will break your heart when they pass on however you do expect to have many years with them. Hubby and I feel robbed we had so little time with our boy and we had so much more love to give. Yes we had his sister Mollie and his nephew and niece (Frankie and Willow) but no dog can ever replace another.

His last Christmas with us.

Non-Compliance

When you are chronically sick the medication you take on a daily basis can seem like a lot of pills to an outsider. Friends, family and even medical staff have sometimes questioned the sheer volume of medications that I take. I have managed to reduce the amount of medicine I take as at one point I was taking as many pills and potions to combat side effects as I was medication. The medications I take now have been found to work for me through sheer trial and error. Take one medication out of the mix and its like a house of cards, it all falls down. 

However some medical professionals like to think within minutes of meeting you that they know better than the doctors that have been treating you for years. Your prescribed medication list is gone over with a fine tooth comb. Every medication must be justified by you. I have left appointments with locum gp’s feeling like a hypochondriac. I have had nurses tell me they don’t have enough space in the bedside locker for all my pills. The pills that I have been good enough to bring in myself from home so that they don’t have to spend half the day at the pharmacy. Why is it the very professionals that dish out the prescriptions are so very averse to their patients actually taking it? it makes no sense.

Patient compliance with medication regimes varies wildly. It is a subject on which vast amounts of money has been spent on researching the issues around it. Whilst carrying out some additional research for this blog post I came across this article on medscape which goes into a great deal of depth about the barriers to patient adherence as they now like to call it rather than compliance. I was shocked to find out how many prescriptions were not even being filled as I had presumed the issue would start after the patient had the medication in their hands. 

Those patients prescribed a long-term drug therapy seem to have a much lower level of adherence than those prescribed a short course of treatment such as antibiotics. So those of us with long-term health conditions that need to take medication on a daily basis seem to be among the worst to actually “comply” with the treatment regime. For more information see this article Factors affecting therapeutic compliance. I wonder what the factors are that create this situation? Is it the sheer number of medications that need to be taken? Is it financial if you have to pay for medications? Is it the side effects from taking the medication that causes people to be non-compliant? My non-compliance was sheer vanity and I know I am not alone with that. I have spoken over the years with patients who have reduced the amount of steroids they take due to the amount of weight they gain through the medication. It seems they are prepared for all other side effects but the mental distress a change in their physical appearance causes due to illness is a bridge too far.

In 2008 I was prescribed steroids and although I was briefly told about the side effects of weight gain and a “moon face” it was made clear to me that those things were minor compared with the health benefits I would gain from taking them. within a few days of taking the steroids I had much more energy than I had, had for a long time. I managed to walk which I had been unable to do for five days. I really felt that my treatment was finally yielding results. Mindful of the fact that they could increase my weight I was careful with what I ate and despite the continual hunger I felt I managed to maintain my weight.

A few weeks after being on steroids I noticed the shape of my face had changed. I was developing a”moonface” or hamster cheeks as my husband and I called it. Despite the fact I hadn’t gained any weight, the change in my face shape made me look like I had gained several stone. I coped with this until I visited my old work place. I was very self conscious because it was the first time any of them would have seen me in a wheelchair. The visit went ok but a few days later I was chatting to a someone about the visit and how self conscious I was about the wheelchair when they replied “oh they weren’t bothered by the wheelchair, all they talked about was all the weight you have put on.”

That one sentence crushed me. I don’t think the person deliberately set out to hurt me, it was more a case of speaking before their brain had engaged. To tell you the truth I don’t even remember who said it. All I can remember thinking was “but I haven’t put any weight on!” Such was the impact of the steroids on the shape of my face it had given the impression I had gained weight. When you are already suffering from ptosis and your face is drooping a comment like that can hit you hard. It could have been very easy for me to stop taking the steroids as they were responsible. I didn’t but I made the mistake of giving into the constant hunger the steroids had induced and 9 months later I had gained 70lbs. My mindset was well if you all “see” me as having gained weight when I haven’t then what’s the f$$king point of not giving in and admitting defeat?

In 2009 I was slowly weaned off the steroids as they were no longer providing any improvement in my condition. As I did so my weight dropped by 42 lbs, those last 28 being really stubborn to shift. I wish that someone had sat me down and explained the side effects of steroids to me in a way I could understand. A leaflet in a medication box doesn’t really mean anything until you are living with the side effects. With a medication like steroids how many people balloon like I did due to giving into the hunger and then develop serious complications due to the weight gain such as diabetes or heart disease? I was very lucky and had no weight gain induced complications. I have been left with a very flabby belly that is impossible to shift and steroid induced stretch marks (another side effect that is casually glossed over).

 

 

How many patients are truly informed about the possible side effects of the prescribed medication before taking it either by the Doctor or at the pharmacy? Could some of the non-compliance issues be resolved if there was an open discussion between Practitioner and Patient? Could greater compliance be achieved if the Doctor’s would be more willing to listen to their patients when they report side effects. How many of us are told that the side effects should subside in a few days, weeks or months?

Clearly the issue of non-compliance / adherence is multifaceted and there is no one solution to this issue. After all the medical profession has been conducting research into this area since the 1970’s and the percentage of those patients who fail to adhere to their medication regime has not reduced. The issues surrounding a patients decision not to comply with their treatment regime is a personal one and needs a proper investigation.

My doctors never found out about my salt tablet debacle, I have never told anyone that this happened (sorry mum / hubby). It was a valuable lesson for me about how much I needed that medication. I can’t promise in the future with a different medication that it wouldn’t happen again.