A weighty issue

My weight has been a major issue all my life at the age of 12 months I was placed on a diet by the health visitor because I had tripled my birth weight of 7lb 13oz. I look back at the pictures of me as a baby and I have seriously asked my mum how on earth could she take that ugly thing out in public? she laughed and said I loved you!

 

I know now that it wasn’t hunger my little body was suffering from but an excessive thirst, even as a baby I was showing signs of dysautonomia (polydipsia) but it wasn’t picked up by anyone. I was only ever tested for diabetes as a child due to my voracious thirst which of course always came back negative.

 My mum and dad have often told me that I would suck on the teats of the bottles so hard that the sides of the bottle would touch and I would create such a vacuum that the teat would disappear inside the bottle, going off like a shotgun when I finished. Having spoken to my mum today she agrees with me I wasn’t hungry it was my thirst I was trying to satisfy and to this day I am constantly thirsty.

During those childhood years I was taller than everyone else and heavier than everyone else. On occasions when I stopped growing I may have been considered a little pudgy around the middle but I was never fat / obese. However being so different from everyone else (leaving infant school with adult size 2 feet and being just under 5 foot at age 7) made me extremely body conscious and hyper critical of every square inch of my body. I was never whippet like, unlike the rest of the girls that I hung around with, I was normal but not rake thin.

 

This insecurity about my weight has followed me all through my life. I have been influenced by the media throughout my life. As a teenager I had a subscription to Vogue magazine. I remember one article quite clearly, which followed a day in the life of the supermodel Naomi Campbell. I remember at the end of the article it said something like “oops I forgot to eat today”. Forget to eat? I can tell you thats never happened in my life! How can anyone forget to eat or have so much control over what they put in their body that they don’t eat? By the way Naomi wouldnt fit in a sample size these days, such is the way the fashion industry strives for thinness.

 

By the age of 17 I had already been to weight watchers and slimming world. I think the heaviest I had ever been when I went to these classes was the top end of 10st  / 140 lbs (perfectly fine for my height of 5ft 8in well within a normal BMI). I look back at the photos of when I was a teenager, when I considered myself obese because I wore a size 14 and think what an idiot. In those days a size 12 would have been acceptable, a size 10 would have been positively dreamy but no I wore a size 14 and in my mind I was an elephant. I think of all those wasted years when I looked stunning and healthy, spent on relentless diets to achieve thinness (perfection) and I think that is what coloured my relationship with food so badly.

 

By my early twenties I had developed a little known eating disorder called “binge eating”. With binge eating you starve yourself for a day or two and then whilst you are starving yourself you plan what you are going to binge on with meticulous precision. Working in food retailing was a binge eaters heaven. All day surrounded by the food you were planning to binge on when you finally allowed yourself to eat. I dread to think how many calories I would consume during one of my binges.

 

Occasionally after a binge I would throw up, I probably made myself sick only on a handful of occasions. The problem was my gag reflex, it was pretty non- existent and sticking my fingers down my throat never produced the desired results. With hindsight I am glad that I couldn’t make myself sick  because if I could of I would have then gone on to develop bulimia. Sometimes my wonky body does me a favour.

 

Around the same time that the binge eating was going on I developed a major depression and had what can only be described as a mini breakdown. I ended up having a lot of counselling, a community psychiatrist was involved and I also had to go to the local mental health unit once a week for almost two years. It was only at the mental health unit that I revealed the issue of binge eating. Through the support of my shrink and some hard work put in by myself with strict adherence to a cognitive behavioural therapy regime, I broke the cycle.

 

I am not cured of binge eating, I will never be cured as there is some place at the back of my brain where this little devil resides. In times of stress when I haven’t been able to eat this little devil bides its time before striking. Unfortunately my husband is a binge eater too and has very little control over his demon. Living with me is pretty stressful. Hubby isn’t a drinker (although we both smoke) his stress relief is food and the more calorific it is the better. It is hard for me when I am trying to be “good” when he brings all the “naughties” into the house. When the binging stops he always apologises for buying the food but as I always say to him, no one forces me to eat the stuff. I suppose its like two drug addicts or two alcoholics living together, its not a great environment to control that addiction.

 

In 2008 I was placed on steroids for my then diagnosis of myasthenia gravis. It was the worst thing that could ever happen to me. Steroids made me ravenously hungry and in 9 months I had put on 5 stone in weight (70lbs). I was the heaviest I had ever been and was wearing size 26/ 28 clothes. I truly was the monster I had perceived myself to be at age 17. I literally couldn’t stop eating. I was so ashamed of the way I looked I hid away. Refusing visits from friends and declining visits from family. I have one picture of myself from that time and its my fat shaming picture, to remind me never ever to get to that size again.

 

I have lost all the weight I put on back in 2008, for years I was stuck at being 3 stone lighter. I was still enormous wearing a size 20/22. I felt disgusted with myself but lacked the willpower to do anything about it. I felt ugly and constantly berated myself for not looking good. All the time celebrities kept getting thinner and thinner.

 

Last year I lost 2 1/2 stone and was the thinnest I had been in years. I felt fabulous, I have though found it incredibly difficult to keep that weight off. Currently I am very limited as to what I can wear. My weight has been fluctuating wildly and I am fed up with not being in control. I have a wardrobe full of lovely size 16 clothes most of which don’t fit. I am gutted that I have let it get this bad. I know that my crazy health situation has a massive part to play in this. Food is used in our house of a way of cheering ourselves up of dealing with stress and celebrating happy events. Our whole life revolves around food.

 

My health being so bad has upset me. I am not depressed its just some days it hits me really hard how bad things have become. The ultimate humiliation was having my catheter fitted by two complete strangers. I am an intensely private person and to have these people messing about with my nether regions upset me. I know it needed to be done and I was grateful as it provided some relief however when you can’t control basic functions like urination it scares you. It also made me dreadfully unhappy for a time.

 

I now feel back in control of things although my bladder has played up (not to the extreme of the end of June), my dysautonomia has been awful during this heat and my pain levels have rocketed I am back to being happy again. Not a grinning idiot kind of happy, just the kind of happy when you can accept what’s going on in your life. Even if I am carrying a few more pounds than I would like to I am back to refusing to let my weight stop me doing things like seeing old friends.

 

I hate the fact that so much of my life has been consumed by what I look like and how much I weigh. There is so much more to me than that. I have many regrets because there are things I have put off doing or haven’t done because I didn’t look good. This madness has to stop, especially when my illness is also trying to prevent me from doing things!

 

I  do feel dreadfully sorry for teenagers these days due to the images they are bombarded with. Due to photoshopping, airbrushing etc celebrities are held up to be the ideal, a size 8 or 10 (uk sizes) is now considered obese. You have to be a size zero or now a double zero to be considered perfection. Too much emphasis is being placed on looks instead of inner beauty. It makes me angry with myself that I allow my body image to be influenced by the fakery portrayed in magazines. I am sick for goodness sake and there are more important things in life than looking like you are dying from starvation!

 

However here I am again on another diet to lose the weight I have rapidly gained due to being on another few weeks of eating junk and not being able to wear the clothes I want to. There is no helping me.

 

This too shall pass

This too shall pass

 

 

I have been repeating this quote over and over in my head since February when my health first started to decline. Its the one thing that has kept me going through a year which I can honestly say is the toughest one I have faced.


In February I took a tilt table test, this was to look at my body’s reaction when I ate or drank because I have postprandial hypotension. Before the test I had to consume 250 ml of lucozade which is just pure sugar and tastes like syrup. Once they had their base line measurements I was then tilted. According to my consultant it was the most impressive one yet. However for some reason the tilt table test triggered off my symptoms in a way no one could have expected or anticipated.


My previous tilt table test in 2011, the one that got me diagnosed with postural orthostatic tachycardia syndrome had left me bed bound for around 5 days. I had been expecting the same with the one in February. This time I was fine for a few days and the wallop! I ate my lunch and then felt my heart rate increase (which is totally normal for me) however after several hours my heart rate had not come down and I was feeling short of breath. Having been in this situation before and knowing that the local hospital would admit me but then do nothing I saw no point in panicking….just yet. I rang my gp the following day and went back on fludrocortisone.


My husband ended up taking a week off from work to look after me. To ease my symptoms I used my oxygen concentrator and ended up staying in bed for well over a week. Since then I have never got back to my pre tilt table level of health.


As those of you who read the blog regularly and follow me on facebook on my The Myasthenia Kid page will know this year I have battled cellulitis 4 times, I have been admitted to hospital because my bladder decided to stop working and I needed to be catheterised. My autonomic nervous system symptoms are still pretty awful. As I write this my head is swimming as due to the heat I am continually feeling faint and dizzy.


Putting all the dysautonomia symptoms aside (I have kind of got used to them horrific as they are) my major battle at the moment is my chronic back pain. Bad backs seem to be a family legacy. Obviously my mum is waiting for major spinal surgery (as written about in Democracy in Action part one and two), my father has also been diagnosed with back problems and needs to have steroid injections but is refusing them at the moment much to the rest of my familys (mum, sister and me) annoyance. My sister suffers with awful back pain and I have been slipping discs in my back from the age of 16.


The pain in my back and the referred pain is so bad that it is depriving me of sleep and making me feel sick. Its not massively high on the pain scale, I wouldn’t rate it much above a 5 -6/10. However it is constant there is no relief.


On a good day I have a burning sensation down my left leg and an altered sensation, my leg feels wet and my foot can feel like I am wearing a wet sock. I also suffer with iliac crest pain – it took me years to work out what this pain was. I can push through this and enjoy whatever I happen to be up to. 

 

I have whats called leg dominant back pain, which means I have very little pain in my back, most of my pain is caused by the nerves that run from my back down my legs.

 

On a bad day (and unfortunately I am now having more of these than good days) the pain is down both legs, my knees throb. My buttocks and the backs of my legs ache and burn and I have a small amount of back pain. On a very bad day the back pain is awful and any sudden movement will trigger a wave of spasms. I have also noticed that my legs will feel heavy and I feel like it takes a real effort to move them. Keeping a diary of the pain I have also noticed there is a connection between the bad pain days and decreased function of my bladder and bowel.

 

Nothing has happened so far to make it a medical emergency such as double incontinence or not being able to go completely for hours. Other than that incident at the end of June when my bladder packed up completely and I ended up with acute urinary retention. 

 

To be honest I have been living with this nerve pain in my leg since 1999 when the original back injury occurred and I never really gave it much consideration until the lyrica (pregablin) I have been prescribed stopped working and my mum found out what a terrible state her back is in. 

 

My back symptoms ramped up at the end of March and I decided to do what I always do which is ignore them. However the pain has increased to such a point now where I can no longer do so. Due to it being nerve pain my opiate pain killers have zero effect on it. Doubling the lyrica dose at night worked for a month or so but I have now had to double that dose and double my morning dose. 

 

My back has got so bad that I am unable to do the things that I want to do. Combining the dysautonomia and the back issue I am no longer able to complete the small tasks around the house that I have always done. Things are starting to build up and get on top of me. 

 

On Friday I realised that I can’t do this anymore and had to ask for help. So I now have a cleaning lady who will be coming for 2 hours a week to help me keep things straight. I can’t keep on asking my husband to do more and more as its just not fair on him to be working full time looking after me and the dogs and then expecting him to do a massive clean as well. At least this way his days off will be spent spending time with me instead of impersonating Mrs Mop.

 

I find it hilarious that I am so house proud now, before I got sick I didn’t do housework unless someone was coming to visit. I was working full time and we were always going out somewhere cleaning seemed like a real drag. Let me be clear my house was never like something off hoarders but it was dusty and things weren’t always put away. Sheets and towels were always washed once a week its just what I call the finer detail was never attended to. 

 

 

One of my fondest memories is my mum coming to visit me in my flat and her saying “you don’t iron your sheets then?” I replied “when I don’t work full time it will be top of my list”. I will be honest ironing my bedding has never made it onto my list of things to do even though I no longer work. To me ironing bedding is as pointless as ironing underwear, life is just too short (and obviously I am physically unable to be stood at an ironing board long enough to iron 2 sets of king size bedding!).

 

As I say my house could never have been described as something out of Hoarders (one of my favourite shows that I like to watch and feel smug. I do know these people have a mental illness before anyone decides to give me a piece of their mind!). It was dusty and well lived in. I had a friend once come over and write clean me on the dust on the TV screen. So I wasn’t exactly on top of the cleaning back then. Plus hubby wasn’t into it too much either having the old fashioned impression that housework was my job. Thank goodness that outdated attitude of his has now gone. I always find it amazing when I look back and see how much both of us have changed from before I got sick.

 

 

 My attitude to cleaning changed when I was at home 24/7 I wasn’t prepared to sit in a mess all day everyday. Over the years I have become obsessively house proud which in turn has made hubby more so too. I am guessing some of the reason for my obsessive attitude towards keeping the house tidy was that I didn’t think it was fair on hubby to be working all day and coming back to a mess. It was all about what I could contribute to our relationship now I wasn’t working. Despite the fact that I would suffer enormously trying to keep on top of things I still felt that being at home all day meant I was responsible for everything in the home. It was never something that my husband demanded or expected it was an unrealistic expectation I placed upon myself. He didn’t care if things weren’t done as he would sort them out when he had the time. 

 

I always felt things had to be perfect. I am guessing that controlling my environment was a way of having some control in my life. I cant control my illness or how I will be feeling hour by hour, so by controlling how our home looked soothed me psychologically. Now I can no longer do this it troubles me and makes me feel guilty as I am yet again contributing less to our relationship. My mantra “this too shall pass” is continually on my mind.

 

Hubby actually told the cleaning lady she won’t have much to do. I beg to differ, hubby still doesn’t see the finer detail and I am fed up with the battle of getting him to hoover the stair carpet and the bedrooms. At least this way I know that they will be getting done and without argument!

 

It was a very bittersweet moment when I realised that I could no longer manage the little household chores that I had completed to ensure we kept on top of things. I am sure if we didn’t have the three dogs there wouldn’t be as much mess but as I could never part from them admitting I needed help was the only solution. It does compound the sense of failure I feel. I am unable to work and now I am unable to keep the house tidy. It makes me ask myself what can I do other than just survive at the moment. I will admit I shed a few tears over this decision.

 

Its going to be very strange for me having our cleaner in the house doing the jobs I used to do (and more). I am already getting anxious about it, what if the dogs scare her – they can be quite noisy on first meeting people, what if she thinks our house is really dirty, should I clean before she arrives? Its all down to a fear of being judged. She has already text me to reassure me that its ok to ask for help. It doesn’t stop the anxiety though, if there is something to worry about I will find it.

 

So here I am the day before my cleaning lady starts trying to distract myself from the anxiety that I am feeling. I have to create a list of the jobs I want done tomorrow…..which I still haven’t started because I feel guilty that I need help.

 

I know that “This too shall pass” however I am beginning to wonder when this year from hell will end. I have never been one to wish the year away but this year is one that I wish would just go. I want a do over and get back to how things were.

 

Trust

“Trust takes years to build, seconds to destroy, forever to repair”

Author unknown



I love this saying because it sums up the issue of trust so eloquently and so much better than I ever could.


Trust is  an intrinsic part of any relationship. In romantic relationships we trust the one we love will be faithful and love us completely despite our flaws. In friendships we trust our friends will keep our confidences. Employers trust their employees to follow the rules. 


The chronically sick have to build up a trusting relationship with those medical professionals that provide their treatment. Without trust in this relationship you end up with a noncompliant patient. 


So many of us within the world of chronic sickness or disease have had our trust in the medical professionals that treat us sorely tested or even shattered. Doctors need to think carefully how they treat their patients as this affects the way that the relationship builds trust. Fail to gain or simply lose the patients trust and the words the medical professional utters will never be believed again.


Due to the way I have been treated in the past by the many doctors I have seen, from gp’s to consultants, my trust in medical professionals has been completely destroyed. I have been told one thing to my face and completely different things have been written in my notes. I have been diagnosed with somatoform disorder but not been told about this diagnosis or been given treatment for it. The diagnosis was not made by a psychiatrist but a neurologist overstepping his boundaries. I have also been placed on medication that there was no clinical rationale to back it up other than to keep me quiet.


How is that building a trusting relationship with your patient? I warily trust the two doctors I deal with now but I know at a moments notice that one false move by either of them and I will be back to square one, trusting no one who treats me.


When you lose the trust you have placed on your doctor, it breaks your heart a little bit. You initially held such high hopes when first meeting them in a state of wide eyed innocence. I have yet to meet anyone who has taken the familiar road of chronic illness, who hasn’t endured the same kind of treatment I have and unfortunately it’s usually at the hands of neurologists. On this journey the next time you meet a new doctor you are just a little bit wary, by the third / fourth doctor you are positively jaded.


When trust is lost you become angry with those who are supposed to be helping you. When you meet the 4th/5th/6th doctor (delete as appropriate) you are positively withdrawn during your meetings. Keeping your answers to simple yes or no’s, you’ve already learnt that an intelligent / informed patient is a threat. Acting either just below or of average intelligence will get you by, it feeds into their superiority complex. ( Apologies to all the good doctors out there as I know there are some.)


My trust in my doctors is being tested at the moment and has been ever since I left hospital in April. There has been what can only be described as a mammoth debacle in my care since then. I like my doctors and I think that they like me, as much as any doctor can like a patient.


In April as those of you who follow my blog know I have been trialling Octreotide which is administered by subcutaneous injections. I am supposed to inject myself daily, 40 minutes before my lunch. However due to repeated bouts of cellulitis and an ongoing issue with my supply of needles and syringes I haven’t injected octreotide since the start of June.


What should have been the issue, obtaining the octreotide (because I am using it off label to treat postprandial hypotension) has been an absolute breeze. I have glass vials of the stuff in my fridge waiting to be used. The issue is the method of delivery.


On leaving hospital I was given ample supplies of needles to draw up the drug and needles to inject the drug along with copious amounts of syringes. All went well initially until I started to run out of needles. Then the games commenced.


My drs surgery informed me that they were not able to supply me with the same type of syringes or needles issued by the hospital. Those size needles / syringes were simply not available on the NHS for prescriptions in the community. I explained that I only had a few needles and syringes left and then I wouldn’t be able to use the drug and was issued with an emergency supply whilst the prescribing team tried to sort the situation out. This was at the start of May 2014.


A few days later after the emergency supply dried up again I was left with the situation again of having no needles or syringes. I got my consultants secretary, the hospital pharmacy, the prescribing team involved and all that happened was that everyone just blamed everyone else for the situation.


Blame is fine once a situation has been sorted, perhaps you can apportion blame when you look at the root cause of the issue. However everyone blaming everyone else has got me no further. I have 200 drawing up needles, 200 injecting needles and ten syringes and its now July 2014. 


I need to start taking the octreotide again the postprandial hypotension is wiping hours out of my day. After my evening meal, an hour later I am in such a deep sleep I can not be roused for several hours. It means that I am very rarely actually spending an evening with my husband.


Octreotide comes with side effects that after a few weeks rapidly decline. However if I only have ten syringes what’s the point of putting up with them if after ten days I will have to stop taking the drug again. It seems to be an exercise in futility.


I am in a very difficult situation. I am within my rights to make a formal complaint about both my gp and my hospital consultant for the way this has been totally mismanaged from the start. Thank goodness I am not diabetic because with the follow up care I have recieved I would be dead by now.


Complaining is difficult due to the fact that my gp is the first doctor who has believed me when I inform him of my problems. It is the same one that came and saw me when my bladder decided to go on strike and instead of getting me carted off to hospital ( a place I hate ) got the district nurse to insert a catheter. He knows what EDS is and he knows what PoTs is. My hospital consultant is the one that gave me the tilt table test which proved I wasn’t the basket case I was being made out to be by the neurology department of the same hospital. I have a good relationship with him ( or I thought I did as I am yet to hear from him since April, no follow up appointment to find out how I am doing).


Making a complaint about either of them could land me in the position where I have no one to treat me or who believes in my conditions. You heard how well I got on in A & E recently. What the hell do I do?


I have an appointment with my gp on 30th July where I will be bringing up the stupid situation I am in where I have the drug but no way of administering it. I will also be bringing up my long standing issue with my back and I will be refusing to leave until both situations are resolved or have more than a casual “I will sort it out”.


My trust in doctors is being tested yet again. It won’t take much to shatter it. I wish medical professionals realised that destroying a patients trust means it colours every future doctor patient realtionship.

Something different my first ever Guest Blogger – Bee

Please extend a very warm welcome to my first ever guest blogger. Bee has only been following my blog a very short time on my wordpress site http://www.themyastheniakid.com ( I also blog on blogger http://www.themyastheniakid.blogspot.co.uk).

 

I “met” Bee through the comments she regularly writes on my blog posts. Always thoughtful and kind I began to really look forward to what Bee had to say about my latest post. A few days ago I asked Bee if she would do me the honour of being my very first guest blogger and to my delight she agreed.

 

I have been thinking about having guest bloggers on my site for a while now but other than my family and friends there had been no one to ask. Bee’s comments always made me smile and it struck me that she would enjoy the opportunity to share a little piece of her story on my blog.
Bee also suffers with an invisible illness, its called Dystonia. I wont tell you too much about it as I don’t want to spoil what Bee has written.
So in her own words I will hand you over to Bee.

 

Bee’s first Blog Post:

 

Hi,

 

I am Bee, which is my nickname. I am a 39 year old,wife, Mother of a 12 year old daughter and 15 year old son. I am quickly encroaching on 40 years old,  which my son loves to remind me of as often as possible.

 

I was diagnosed with a Neurological Movement Disorder, Cervical Dystonia also known as Spasmodic Torticollis in October of 2009.

 

I had headaches for approximately 10 years, before I was finally prompted to go to a neurologist in 2009. Fortunately the neurologist I saw had trained in the area of Dystonia. I was so fortunate to see him because it often goes undiagnosed or is misdiagnosed. He was wonderful in every sense of the word. I will always be grateful for his kindness, professionalism, and collaborative approach to my care. I was relieved to know why I had headaches but I did not know what was in store for me in the upcoming years.

 

The definition of Dystonia provided by the Dystonia Medical Research Foundation:

Dystonia is characterized by persistent or intermittent muscle contractions causing abnormal, often repetitive, movements, postures, or both. The movements are usually patterned and twisting, and may resemble a tremor. Dystonia is often initiated or worsened by voluntary movements, and symptoms may “overflow” into adjacent muscles. Dystonia is classified by: 1. clinical characteristics (including age of onset, body distribution, nature of the symptoms, and associated features such as additional movement disorders or neurological symptoms) and 2. Cause (which includes changes or damage to the nervous system and inheritance). Doctors use these classifications to guide diagnosis and treatment.

 

We know where mine is located in my body but we don’t know the age of onset, or the etiology. I have had genetic testing but it didn’t reveal any insight.

 

I would like to share a little bit about my treatment and how it has impacted my life, as well as, my family’s. Hopefully I can provide you with a part of my journey without boring you to tears. First and foremost, I realize that I am fortunate because I know many others suffer far more than I do.

 

Of course I have been told that I am a complex case and not the standard kind. That pretty much describes me in general, so that works out perfectly. I do not twist or tilt to a particular side like many people with Dystonia do. I am more or less in somewhat of a stuck position. So to many I don’t appear sick, it is another “invisible illness”.

 

So onwards to the very thrilling aspects of my treatment that have taken place over the last few years. I began with oral medication, which did not work well with for me. I was so tired and impacted by the side effects. I moved on to Botox injections, not for vanity or cosmetic purposes. Botox is a toxin, which paralyzes the muscles, it comes from the Clostridium Botulinum bacterium .

 

I began with 100 units of botox (given to me via injections). I gradually moved up to 200 units and not forgetting to mention I still remain on oral medications.

 

I often hope I am trading one treatment for another. I have been strongly mistaken in ever thinking one treatment would replace another or that one treatment would magically be the cure. Dystonia is an incurable condition, Drs like to call this a “treatable condition”.

 

The last time I moved the part of my body affected by Dystonia, it was almost two years ago.

 

Since that point my treatment has changed quite significantly. The amount of botox I receive began to be steadily increased. I now receive 400 units of botox. Just to put that in perspective when people get botox for frown lines etc. the dosage is typically somewhere around 10- 20 units.

 

During this time frame I also began taking the oral medication Baclofen, which is a muscle relaxant. I am now jumping forwards in time… Because my Baclofen was continuing to be increased orally and the side effects impacted my daily functioning, I have since had the Intrathecal Baclofen Pump implanted.

 

I have a device the size of a hockey puck in my stomach and a catheter in my spine that administers medication continuously as well as additional boluses in 4 hour intervals. The side effects are supposed to be decreased because the dosage is much lower due to the way the drug is administered. At this point adjusting the dosage is ongoing as we try to reach the right dose for me.

 

Additionally I am now up to 500 units of botox for Dystonia as well as Migraines. My Migraines were initially diagnosed as chronic daily headaches. It has been almost 8 weeks since I had the Baclofen Pump surgery. So as I said earlier I continue to add treatments in the of hope of limiting other medications. As of yet this has not happened, we will see what the future holds.

 

Now that I have entertained you beyond words with my abridged medical treatment I will provide you with a quick summary of the impact on my family!

 

As a mom I feel much guilt, as there are many negative ways my condition has impacted my children. They have had to live through the side effects of numerous medication changes.

 

When our daughter was about 9 years old she saw a commercial for a medication that was the worst one I was ever on. She held her fingers up in an X, I quickly knew that medication changes were not a joyride for myself or my family.

 

I could tell you many more stories about medications but I will spare you the excitement.

 

I worked at the beginning of my diagnosis but was so tired from the pain and the medications I was on. I had to stop working, which I have found very difficult to deal with emotionally.

 

Fortunately I have a rather angelic husband, that not only loves me but also tolerates my craziness. He does the things with my children that I can no longer do. I often ask my children if they remember the many things I used to do with them.

 

On a positive and very proud note our children have grown up to be very compassionate and understanding. They are always thinking about whether or not it is in my best interest to attend activities, based on my comfort, the length of time etc. They are helpful, loving and kind. Of course I still feel guilty but believe that Dystonia has had a role in shaping their wonderful personalities.

 

I could continue to go on and on about my experiences. Perhaps I will be featured another time on Rach’s blog.

 

Thank you so much for the opportunity. 🙂

 

Best Wishes to everyone.
Many thanks go to Bee who was kind enough to share her story with us. I have added some links in case anyone wants to understand in greater detail some of the issues discussed by Bee in her blog post.
Dystonia

 

Botox

 

Baclofen

 

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“Do you work?”

“Do you work?”

 

It is a question I get asked frequently, usually by medical staff. I feel embarrassed when I have to answer, admitting to not working these days . It leaves you feeling that you are in some way a scrounger dependant on others for your means to survive.

 

The truth is I would love to work and I think its great that medical staff see past the wheelchair and my long list of medical complaints. Disabled people are more than capable of being part of the work force, however the issue is not that disabled people are lazy or unwilling to be “productive” members of society, there are usually a whole catalogue of reasons why they find themselves without gainful employment.

 

I was recently asked this question by an old school friend that I hadn’t seen for over 20 years. It is a natural question when you are chatting to someone when you first meet them or haven’t seen them for a long time. I hate this question because it automatically put me on the defensive. I feel like I have to justify the reasons why I can’t work and excuse my inability to be a normal human being. That wasn’t implied by the questioner but it is how the question made me feel.

 

I understand why medical staff ask the question, they want to know if there are environmental factors that could be at play contributing to your condition. They want to assess what it is that you are capable of doing. However when asked I feel like I am being asked to justify my very existence.

 

You see I would love to work, I worked from the age of 16 to 34.  I was very good at my job and my colleagues will still contact me to ask my advice about things even though I haven’t worked since 31st May 2008. I had never had a disciplinary, my capability to do my role had never been questioned, I never imagined that at any point during my life other than retirement that I wouldn’t work ( unless I had a winning lottery ticket ). I never thought that I would become so sick that I wouldn’t ever be able to go to work again. I never imagined that if I did become sick that my employers would be unwilling to make the reasonable adjustments required by law under the 2010 Equalities Act or when I was working the Disability Discrimination Act. I never in my wildest dreams believed that any of this could happen to me.

 

You may read my blog and think she sounds like an intelligent person, her blog posts must take her ages to write etc etc. I would agree that yes I am above average intelligence and my blog posts are time consuming and exhausting. Hence why I only publish twice a week, I would love to have the ability to write full time. However I am only viable for a few hours each morning, after that I struggle with any task that demands mental acuity or physical expenditure. My days follow the same pattern 365 days of the year.

 

I get up each morning riddled with pain despite still being inside my 12 hour slow release dose of morphine. Pain wakes me up every morning and is much more reliable than any alarm clock. Just because I don’t squeal, shout or cry on waking doesn’t mean I am not in pain, it just means I am used to it. I sleep on a memory foam mattress topper, yet I still wake every day feeling like I have slept on a concrete slab. If I wake up lying on my side the pain will be from my face down, whatever part of my body has been in contact with the bed will hurt. If I have been lying on my back the pain is from the back of my head down. The first thing I do every morning is take 5ml / 10mg of oramorph to dull ( notice I say dull because to actually get rid of the pain completely I would have to take such a large dose I wouldn’t be able to function) the pain until its time for my next lot of pain killers.

 

I make my way downstairs and put the kettle on for what will be the first of many cups of tea that day. I have polydipsia – excessive thirst which is part of my dysautonomia symptoms, this is day and night (at night I will go through 3 litres of fluids). This also means a lot of bathroom breaks because I do not hold on to what I drink regardless of the sodium and florinef tablets I take. I also have my first cigarette of the day ( I know thats a hanging offence and I know its not healthy). By the time I sit down for my first cigarette of the day my orthostatic intolerance kicks in and I will have the first of many pre-syncopal episodes of the day (in varying degrees of severity) some days I am lucky and my vision will just grey out and I will feel shitty, other times I am left working out very quickly which direction it would be best to faint in (for the least amount of physical damage). For the casual observer you wouldn’t notice this because if you were talking to me I would just carry on the conversation, not because I am some sort of hardcore hero but because I am so used to it now I try to prevent it being a big issue ( that works fine until I actually do black out / faint).

 

Once my cup of tea is made I then make my way to the sofa and this is where I will stay until it is physically safe for me to climb the stairs again to have a shower (helped by my husband). This will take several hours to achieve, again to the casual observer nothing appears to be wrong with me other than the fact I look like a lazy bitch. You see my illness gives you no outward signs, no clue as to what is going on inside. Its easy to make assumptions by just looking at me.

 

During my enforced sofa time, depending on how mentally with it I feel I will check my emails, facebook, twitter and if I am ok I will attempt to write one of the two blog posts I write every week. Some weeks I don’t manage to write two, thankfully I have used the good weeks to put together some what I call back pocket posts, ones I use in an emergency. However my emergency posts are not always fully formed and need some work done to them, in those situations I usually just post my apologies.

 

If I am not up to writing then I will watch TV, due to my enforced early bedtimes – anything from 4pm onwards I have to record a lot of programmes that I follow in the evenings. I haven’t seen evening TV for so long I couldn’t tell you what happens after the 6pm news on BBC1. I follow a lot of TV far much more than I will ever admit to. Somedays I can’t even do that because my memory is so poor I can’t remember what happened in the previous 15 minutes and the plotline is making no sense.

 

If I manage a shower and there are many days that I don’t, I need to have an hour or so of rest to get over the physical exertion. Things have changed dramatically from my pre sick days. I used to wash and blow dry my hair everyday, I wore make up – even on my days off. I never left the house without make up. I wore nice clothes and believed that sweat pants were for gym bunnies or obese people that were just kidding themselves. Its easy to be judgemental when you’re not in others positions. My favourite piece of clothing now is a pair of yoga pants and a sweat top or pajamas. I used to be well put together and took pride in my appearance. All of that takes far too much energy these days and the energy I do have I want to use for other things. I still make an effort for special occasions and doctor appointments ( sometimes doctor appointments are special occasions as it maybe the first time I have been out of the house in months). 

 

I have learnt that you need to be properly dressed and wearing a full face of makeup for doctors appointments otherwise you get accused of being depressed. The fact that the journey to see them is going to take you days to get over, even though it was only a 15 minute car ride is neither here nor there to them. Anyone who doesn’t take pride in their appearance must be suffering from depression after all thats what they learnt at med school. I also learnt not to wear a lot of black to these appointments, black is one of my favourite colours with very pale skin and blonde hair black is dramatic on me especially if I go for bright red lips. Unfortunately doctors aren’t that fashion forward and all black is another indicator that your sickness is all in the mind. Anyway I digress as usual!

 

As the day ticks on by the less and less energy I have. I struggle to keep myself upright even in a seated position. Due to Ehlers Danlos Syndrome affecting my spine as the day progresses my spine takes on the shape of a letter C and my neck starts to struggle to hold my head up, it lolls towards the top of my back. This is not comfortable but as I try to stay out of bed as much as I can I will lie on the sofa or sit propped up by cushions. I have difficulty thinking clearly and have difficulty finding the right words. I know the word I want yet it cant seem to make its way from my brain to my mouth. It hasn’t been just once that on my personal facebook page I have asked friends and family for the word I am looking for. To know that you are an intelligent person and to fail to be able to articulate is soul destroying. It is one of the symptoms I find hardest to deal with.

 

My sight deteriorates throughout the day as well with varying amounts of double vision or ptosis (which can affect one or both eyes). Using computer screens becomes more and more difficult. Dependent on what level my health is at on a particular day I may have to use my oxygen concentrator to supplement the amount of oxygen circulating in my system.

 

Bed can never come soon enough and it’s not uncommon for me to be so exhausted by the mornings activities that I need to sleep for an hour or so in the afternoon.

 

I realise now I haven’t even mentioned the other ways in which my dysautonomia can impact my day. I never have a day when my postural orthostatic tachycardia syndrome does not play a part. On a bad day every change in posture (which can mean as little as turning over in bed or moving my head) is accompanied by the feeling of my heart racing to the point it seems as if it will burst out of my chest. I become short of breath and can feel at times that I am having a heart attack such is the severity of the pain in my chest. Again to the casual observer it would only be on a very rare occasion that you may notice that there is wrong with me. I am the master of disguise and to admit to you that there is a problem means that you are in my inner circle, the only people I tell the truth to when you ask me how I am.

 

Next time when someone asks me “do you work” I am going to answer “Yes, I am a professional sick person. Such is the level of my expertise you will never realise the sheer shittiness of the hand I have been dealt!”

 

Democracy in action part 2

“Illness is neither an indulgence for which 

people have to pay nor an offence for which they should be penalised

but a misfortune, the cost of which should

be shared by the community”

Aneurin Bevan – Founder of the NHS

 


Things have moved quite quickly since part one of this post so I will try and update you all the best that I can.


The hospital had asked me to email them with all the details regarding my mother’s case six days after I had sent those first three tweets (detailed in the last post). The following day I wrote a strongly worded email to the hospital explaining that the longer my mum waited for the operation the more permanent nerve damage she would suffer and the less improvement there would be from the operation.


By lunchtime the following day I was yet to even receive an acknowledgement email from the hospital. I thought that this was very bad manners on their behalf and took to twitter again to express my dissatisfaction. Let me be clear I wasn’t expecting a resolution to my complaint but it is standard practice to at least acknowledge an email. It had taken them six days to respond I was not going to allow them a further six days to acknowledge my complaint.


As I started having a nosey at what had been tweeted about that day I noticed a lot of the content was about Prime Ministers Question Time (#pmqs ) and the NHS waiting lists. In parliament that day an MP had raised on behalf of his / her constituent the fact that a patient was waiting 33 weeks for surgery. A lot of MPs that I follow were calling on the government to take action. 


My husband and I normally watch PMQs as he almost always does a late shift on a Wednesday, this week however he had gone in early. Without him being at home I had completely forgotten what day it was and that PMQs would be on. As MPs and people I follow were discussing the NHS I thought this would be as good a time as any to try and bring my mother’s case into the spotlight.

 

I tweeted several MPs one retweeted me that was Labours Diane Abbott, which I was extremely grateful for. I continued to tweet about the hospital and contacting any MPs I could think of that may be interested. This is just a small sample of the tweets;

 

thankyou we can’t get or interested in my mum’s case. She is a carer for my disabled sister

 

pls rtwt why has XXXX got a 12 month wait for spinal surgery? Mum needs surgery as she is a carer.

 

could you e mail me re that? She has legal right under constitution to be treated within 18 weeks xxxxxxx@parliament.uk

 

 

 If you look at my twitter account you can see how busy I was firing off tweets to anyone I could think of. Suddenly the MP for Exeter was interested and he mentioned the NHS Constitution, something I profess I had never heard of before.

 

Ben Bradshaw’s tweet was like a light at the end of a long dark tunnel. I emailed him immediately explaining what was happening with regards to my mum’s case and then I started googling the NHS constitution. 

 

The constitution was a real eye opener it explained the 18 week time limit from referral from your GP to the time you get treatment via your consultant. The hospital could no longer have the advantage with my complaint as now I knew about the constitution and as they say knowledge is power.

 

As soon as I received a tweet from Ben Bradshaw MP the hospital contacted me via twitter, wanting to know who I had emailed and when it had been sent. I replied giving them the email address they supplied me with and confirming yet again that I had emailed them over 24 hours previously. Within 2 hours I had an email responding to my complaint. Funny how these things happen isn’t it?

 

I responded to their email by informing them that I now had several MPs involved / interested in my mum’s case and all future correspondence from themselves would be forwarded to those MP’s. This seemed to have the desired effect as they then emailed me back informing me as I now had an MP involved my complaint would have to be dealt with via their formal complaint procedure. I never asked for it to be dealt with in any way other than formally. Strange isn’t it that now they knew that I had knowledge of the NHS Constitution (which explained the 18 week rule and the formal complaint procedure) and now that Ben Bradshaw was interested that they suddenly started taking my complaint a lot more seriously. I know I sound cynical but it had taken them 6 days to respond to me on social media the previous week, yet kick up a bit of fuss, name and shame them on Twitter and suddenly they spring into action. 

 

My mum’s condition has taken a turn for the worse and last week whilst staying at the caravan she spent the whole week in an awful lot of pain. Whilst at the van she received a phone call from the hospital asking her to attend an appointment with her neurologist. My mother pointed out to the caller that she hadn’t seen her neurologist for several months and that her case was now being dealt with by a neurosurgeon as she was waiting for an operation. The caller stated that they would look into this and my mum thought no more about it.

 

During the same week I received an email from the PALS department who are handling the complaint asking for my mother to fill in a medical records release form. To deal with her complaint they needed to have my mother’s medical records so that they could see what I had been informing them of was true. I informed them that mum would be returning from holiday shortly and once she had she would complete the necessary paperwork to allow them access.

 

My parents returned from their stay at the van last Thursday and found a letter from the hospital waiting for them. The hospital had written to my mum inviting her in for a CT scan on her spine next month. Things appear to be moving now.

 

My mum had been informed by her neurosurgeon in June that before her operation could take place a CT scan of her spine would be performed so that he would have an up to date picture of what was going on before her surgery. She was told that this would take place only a few weeks before the surgery as any earlier than that and the situation could change before the operation. It would be a waste of resources to complete a CT scan now and then make her wait a year for surgery as she would require another one.

 

Although nothing has officially been confirmed we are hopeful that mums surgery will take place in August. Mum is not exactly thrilled, she is struggling to come to terms with the fact that she needs spinal surgery and that it will be a long road to recovery. I understand her fear and reluctance, the surgery as with any surgery comes with risks – paralysis, loss of bladder / bowel control but the risks she faces with surgery are the same essentially that she faces in the long term if she refuses surgery such is the seriousness of her condition. Its very hard to see he this scared and I feel like I have forced the issue. She admits herself she has been living in denial about it but deep down she knows the operation must go ahead.

 

The hospital have 25 days from my complaint going formal to respond in full. So I am waiting to hear what they have to say for themselves. We have still been unable to get my mums MP interested in her case using twitter. In the next week I will email him directly and see if this provokes a response. I hope that it is not party politics that is preventing him getting involved and just an oversight such as he hasn’t seen the tweets or has been away on holiday. Jeremy Hunt The Secretary of State for Health is also yet to respond but I should imagine his twitter feed is filled with stories like my mothers and plenty of abuse seeing as though he belongs to a political party that seems hellbent on destroying the NHS and the welfare state.

 

Yesterday I received a letter on  official The House Of Commons paper Ben Bradshaw MP had written to me to inform me that as neither my mother or myself were in his constituency he was bound by parliamentary rules not to get involved any further in our case. This was quite a blow as I had hoped that he would be able to apply pressure and ask questions of the hospital. It seems democracy is only in action if its in the interest of your MPs party. Ben Bradshaw is a Labour Party MP, the party that founded the NHS, both mine and my mothers MPs belong to the Conservative Party. The Conservative Party aren’t great supporters of the NHS and are deliberately running it into the ground with the aide of the Liberal Democrats so they can sell it off to their chums in private health care.

 

Although my mum’s case seems to have moved forward I am feeling a little despondent. Despite all my hard work the scandal at my mum’s hospital is still going unnoticed by those in power. Those who are interested hands are tied due to us not being constituents and there are many other people languishing on NHS waiting lists because they don’t know have the knowledge to challenge their local hospital or are not social media savvy and are unaware of how to make a fuss. 

 

The trolls who contacted me on Twitter – yes I attracted trolls, due to complaining about NHS waiting times, said I was wrong to highlight the case of one unfortunate person when the NHS had done so much for so many others. My aim was not just to improve the lot of my mother but to draw attention to all patients of this hospital who were being made to wait more than 18 weeks for treatment. Its a hollow victory for me if it is only my mother who benefits from this.

 

I hope that through my blog and my own facebook page I have educated others about the NHS Constitution and how to complain to your local hospital should you be facing a wait of more than 18 weeks. That will be my legacy.

 

NHS Constitution

 

The Handbook to the NHS Constitution

 

How do I find out who my MP is?

 

 

 

Trying to be normal, its a killer!

Sorry if you were expecting Democracy in action part two today so was I. Unfortunately I am just too tired to write the post and do justice to it. Plus events are pretty fluid at present, until I get something more concrete to tell you I am going to leave it for this week.


I have been attempting a normal life for the last few days you know going out and socialising, I am beyond exhausted and the craziness won’t stop until Saturday. The funny thing is none of it was planned.


Normally if a week like this is planned I would have spent a considerable amount of time in the previous weeks writing blog posts and getting them scheduled, knowing that a) I won’t have time to write or b) I will be too tired to. I am hoping to get Mondays post written Thursday. I always find it difficult to write if hubby is home…..he is very distracting in a good way.


Hubby is on holiday this week and its coincided with my parents being up at their caravan which is just a few miles down the road. Mum and dad have really needed a break from everything that has been going on lately. Mums back has suddenly started causing her a great deal of pain, dad has also injured his back and is looking at possibly having steroid injections (which he is putting off). So they can’t really do any of the jobs they had planned for their own house and my sister is on holiday also so there are no responsibilities tying them to home.


I haven’t really spent much time with my parents this year so far. I have had a few hours here and there at the caravan and I am on the phone several times a day. So this week I have been spending time at the van. Unfortunately even though it just involves a ten minute car drive and sitting down, trying to be normal has completely wiped me out. 


We also (hubby and I) also got the opportunity to go into the city and spend four hours looking around the shops and getting lunch out. Many thanks to our best friend who looked after the dogs for us. Our dogs all have terrible separation anxiety and can’t be left without us receiving noise complaints due to their singing (aka howling) and mass destruction of our home.


In an 18 month period many years ago before I had to give up work they destroyed 3 sofas (2 leather and one cloth), the majority of the woodwork going up our stairs, part of a kitchen unit, a coffee table, an x-box, 2 antique cabinets and a tin of paint to name the things I immediately remember. The tin of paint is still a painful episode for me because it took four hours to clear up and the dogs were pooping white for nearly a week. They were in basic terms little shits.


They were never left all day, hubby and I deliberately took different days off, worked shifts and opposite ends of the day and always came home for lunch. The longest they were left was 3 hours. Yet for them five minutes alone was too long. Now they are never left unless we have someone to look after them and I am now basically housebound.


I am writing this on Tuesday (8th July) and I could quite happily be in bed asleep. Its only 14:15hrs but I am hurting all over from spending 4 hours in my wheelchair yesterday and being at my parents van for several hours Sunday. I would never have planned a week like this in a million years. I like to have several days / weeks between outings to allow myself to recover. Although mentally I will find this week very stimulating, physically I am expecting to crash from Saturday onwards.


Today has been spent cleaning out the bird seed that has germinated between the slats of the decking – I can do that job as I am sat down. Then hubby has got our old vacuum cleaner out and removed all the bird seed the wild birds have thrown everywhere. 


Then we moved onto the big job of cleaning out the fridge freezer, a new one is being delivered on Wednesday afternoon. Thankfully mum and dad have a small freezer up at their camper van that we have been able to borrow so that the contents of our old freezer can be decanted into that whilst we wait for the new freezer to be delivered and come up to temperature. My neighbours are taking my medications that need to be refrigerated and we have a cool bag for the contents of the fridge. We should get a text an hour before they deliver the new one so fingers crossed everything stays cold enough in the cool bag with the freezer blocks in it!


As I am typing this our old fridge freezer has now been moved into the lounge ready to be collected. Its never a dull moment here.


Tomorrow is just as crazy ( a normal day for most people) I have blood tests to be done in the morning. My parents are taking me to the doctors surgery so I will have to use my crutches as with both of their backs being bad they can’t lift my wheelchair in and out of the car. Luckily you can park right outside the surgery so I don’t have far to walk. I will be bringing a hot water bottle with me to try and trick my reluctant veins to stay at the surface so its easier for the nurse!


In the afternoon my husband has his appointment with his dermatologist in the city and its right at the time the new fridge freezer is being delivered. So no afternoon snooze for me. Hubby will have to move all the furniture for me so its all ready for the delivery team.


Thursday is the first day that I will get to have a rest as my hubby is going down to Plymouth to visit his parents. My day will either be spent in bed or on the sofa watching the box set of “Rookie Blue” which I got into a week or so ago. The whole box set of series 1-3 has been available to download, so hubby sorted that out for me. I dont think I will be able to rest much as I am currently running on adrenaline. Until the adrenaline subsides, I won’t sleep well or be able to rest without becoming twitchy.


Thursday will also be filled with excitement as on Friday a good friend from school is coming to visit me. We have been in contact on facebook for a while but we haven’t seen each other since leaving school in the 1990’s. Its going to be brilliant catching up properly again. We have had a few phone calls and we’ve just slipped back into how we were when we were kids so I am really looking forward to it.


So its a crazy busy week this week. I never have weeks like this, I never plan for weeks to be like this. I am enjoying it I just wish my body would too. Fingers crossed if I am well enough over the weekend Democracy in action will be ready for Monday’s post. 


Apologies xx