GP appointment

Its been a few days since I posted so I thought I would write a few words to let you know how I am getting on.

Yesterdays Dr’s appointment went well. I am having a course of acupuncture to try and help with my back pain. I can lightly touch 4 vertebrae in my back and be in absolute agony. It has been this way for years. My new GP Dr J wasn’t aware that my back was in such a state. He asked “Is it like that all the time?” To which I replied “all day, everyday”. Luckily one of the Dr’s at the practice is trained to administer acupuncture so I don’t have to pay for it as it will be on the NHS. I hope it works although due to the Ehler Danlos Syndrome I do tend to bleed and bruise where the needles have been inserted. It always horrifies the acupuncturist as its so unusual for people to bleed or bruise as the needles are so very fine. That’s EDS for you.

We discussed pain relief and the next level is morphine. Although I am in pain and I am still in pain despite paracetamol, tramadol, naproxen, amitriptyline and a iburprofen gel its currently at a level I can manage. I don’t want to move to serious opiates yet. I will live for another 40 years (hopefully) and once I go down the opiates route I am running out of pain management solutions. That’s a long time to be without adequate pain relief. Believe me there are some days where the pain is so bad I would sell my own grandmother to have some morphine to reduce the pain for a few hours. However that level of pain isn’t constant, if it was I would have taken the morphine without so much of a backward glance.

The GP is doing referrals for Physio and Neurology. We have decided that I will not be returning to see my previous neurologist. To be honest I was dreading the thought of having to see him again. He doesn’t have anything useful to add and can not think outside the box which is what is needed in my case.

As for my general health I’m not in a good way today. I had two falls yesterday which have left me hurting all over. The first fall was after the Dr’s appointment, I was transferring between the wheelchair to the car and I managed to get the hem of my trousers caught on the foot rest. I ended up falling flat on my face onto the passenger seat. Thankfully no one was around to witness this, other than my husband as I would have been so embarrassed! The second fall was in the evening I got out of bed and managed to get one foot caught under the laptop cable and one foot caught under the electric blanket cable. One step forward and I toppled onto the radiator. I made such a bang hubs shouted upstairs to ask what was I doing, my response was “break dancing!”. That response means he will run upstairs to check on me as that means I have fallen over.

So today my hands, fingers, shoulders, back, hips knees and Achilles tendons all hurt. I have taken my medication cocktail. I am now lying in bed trying to get comfortable.

A new day………….

I find it totally amazing how my mood can shift in twenty four hours. Don’t get me wrong I am still depressed, I still feel disconnected and out of it but I am no longer crying at the drop of  a hat. Yesterday I could barely speak for all the emotion, today I have managed conversation without breaking down.

I have tried to remember today what I find joy in. Sometimes its easy to forget and get so caught up in the feelings of isolation and loneliness that you can’t see past them. Its easier to crawl under the duvet than face the world. After reading about Alice and her bucket list in the papers/twitter and facebook I felt a bit of an idiot, putting it very mildly. This poor child  at 15 years old is facing the fact that she is terminally ill with cancer. It makes me remember in the bleakest moments that I do have a future and I have a choice how the future unfolds.

I have to take each day at a time at the moment. Some days will be down days and  on others  I will be happier. I have to let myself know its OK to have the down days. Gradually the down days will become less and the happier days will become more. I make it sound very easy, it isn’t I have been here before. I am lucky that I have caught myself before slipping completely into the black hole that is depression. I see myself at the moment as clinging onto the edge of a big abyss. I can choose to let go and fall or I can start making small cautious moves to lift myself out of it.

I’ve done talking therapies and CBT before but this time  at present I can’t see how these can be helpful. CBT – Cognitive Behavioural Therapy is a good therapy. I have been using these techniques for over 10 years. There isn’t much that any practitioner could tell me about it. Its great when there is a problem to solve such as building self esteem or confidence, getting over the break up of a relationship or helping coming to terms with a bereavement. Some of you may argue surely you are grieving for your previous way of life? I agree I am but there’s no putting me back together again. I can’t get back there. I need to deal with the here and now and face up to the reality of the situation.

So I have to find different ways to live the life I want within the limitations of the body which isn’t co-operating. For instance today I had planned a few small jobs that I should be able to tackle……normally. Unfortunately the body wasn’t going to co-operate, I felt incredibly weak ( as if lead weights had attached themselves to my limbs overnight, sneaky beggars!) Also for some unknown reason my blood pressure has decided to plummet which also makes me feel lousy. So alternative plans had to be made. Instead I did a bit of research on various subjects, did the grocery shopping on line and returned emails that I had been unable to face earlier in the week. It kept me out of trouble for a few hours.

I have to share some lighter stuff with you all after all this doom and gloom.

Firstly it is my firm belief that rum and raisin ice cream should be available on prescription! I love the stuff and with a reduced appetite sometimes its the only thing I fancy eating. I got introduced to Rum and Raisin ice cream at an early age, I have my auntie Ruby to thank for that. I can remember she made me a rum and raisin wafer. I’d never had a wafer before and I was hooked. Wafers may come and go but rum and raisin remains a constant!

I have had a female blackbird hop into my kitchen this week to take shelter from the really heavy rain. I had left the patio doors open so that the dogs could go in and out to the garden as they wished, rather than having to get up for them. I saw Mrs Blackbird in the garden checking my plant pots for slugs and snails and then suddenly the rain went crazy. Well in she popped into the kitchen and sat looking out at the rain! Thankfully all the dogs were asleep at the time otherwise they would have thought breakfast had been delivered. I watched her for a few minutes and then she flew off.

I am not too happy with Mrs Blackbird though as yesterday she helped herself to my one and only nearly ripe strawberry! I had been diligently protecting it from Mollie for a few days. Thankfully there are more on the way. I just hope we humans can get in there first!

Thanks for reading xx

100th Post

Today is my 100th post and what a journey we have been on together. There have been highs and there have been lows! However I have finally reached a landmark in blog posts and I have had very nearly 2,000 views on my blog.

Just recently I have come across lots of other EDS people on the Internet and it has been interesting hearing their stories and hearing their coping mechanisms.

Clover left me a very good comment the other day which went something like “trying to hide an illness is like trying to hold a beach ball under water.” Its very true and it struck a chord with me.

 I have been holding that beach ball under water for a long time and last night it pushed its way up to the surface. Last night I had to admit to myself and my hubs that I’m not coping at present. I have a history of suffering with depression and for the last year I have been battling a very lonely fight. I couldn’t admit to anyone that there was a problem as I knew that as soon as those words left my mouth no one would bother to try and find out what was wrong with me. They would use the diagnosis of depression as a catch all diagnosis pump me full of anti depressants and send me on my merry way.

The depression hasn’t been truly horrific until the last few weeks. Last year I had a few downs but managed on the whole to pull myself out of them. I recognised the signs and did what I could could pull myself out of the black hole.

Unfortunately recently the bad days have been increasing, I want to throw pity parties practically every other day. You may have noticed it in my posts. I know close friends have. I should have taken action much sooner than allow myself to get into the state I am in at the moment. I have pretty much been crying on and off for the last twenty four hours.

I have spoken with my Dr this morning and as I am seeing him on Monday he wants to talk to me properly then. Quite rightly as he points out any medication could take up to two weeks before I start to feel better so a couple of days is neither here nor there. I actually feel better opening up about it and saying how I truly feel instead of pretending to every one that I am OK.

I think its been triggered by the fact I am no longer fighting day in and out for my voice to be heard and for the medical profession to accept that there is something fundamentally wrong with me. The depression no doubt is a battle scar that will heal in time.

The classic signs have been there that I should have picked up on but chose to ignore. Problems sleeping, early waking, not interested in things that I used to take pleasure in. Feelings of hopelessness, isolation and not able to communicate properly. I feel like I am looking at the world through someone else’s eyes. I am disconnected from the world around me.

I am also finding it hard to accept that the bunch of medical conditions I have can be treated but not cured. The Rachel before all this happened will never come back in the same way she was. There will probably never be any dog walking on the common again – the thing I miss the most. I will never work again too unreliable health wise and what can I do lying down most of the day? I don’t know why after 4 years of going through this its suddenly hit me very very hard. I am in mourning for the life I had and the version of life that I have lost. Unless you are in this position you can never get to see what its like and I hope you never do.

At the moment everything seems very bleak and I am struggling to motivate myself to do anything.

I know in my heart of hearts that it won’t always be the case and considering what I have been through in the last few years its hardly surprising its taken a toll on my mental health. I am looking forward to feeling better but at the moment its an hour at a time rather than a day at a time.

I have also reached out to family and friends today who have realised along time before I did that something was amiss. Their support has been fantastic and I thank them for it. All of them know that I have battled the depression demon and overcome it, as I will again.

If you are suffering from depression, for what ever reason please don’t be stupid like me and get to the point where you can’t function like you used to. Reach out and tell someone how you feel, speak to your GP and let them know that you aren’t coping. By doing this myself I already feel like a great weight has been lifted and its not something that I have to carry alone. Depression is not a sign of weakness……if it was Winston Churchill would never have been Prime Minister, Stephen Fry wouldn’t be the charming man that he is.

Thanks for listening.

I wish …….an update

I just thought I would update you all after my post on Sunday. I didn’t want you all worrying about me. I have also been struggling to come up with something that I felt interesting enough to post about.

So first the good news….. I won ten pounds on the lottery on Saturday night! Also this morning I opened my emails to find that I had won a ten pound Amazon voucher through a prize draw. I am part of an online survey group called “Inside the Box”. They send through random surveys about television programmes you may or may not watch they take about 5 minutes to complete. Each time you complete a survey you are entered into a prize draw. The top prize is always something really good like a 3D TV and then there are a load of vouchers they give away as well. I have been completing the surveys for around a year and this is the first time I have won a voucher. I will be putting my ten pounds towards a TENS machine as over the last few days I have been borrowing a friends and had good results with it.

I would also like to take the opportunity to thank Rachel for letting me know that a baby Fox is called a Kit. Now that she has said that I remember! Apparently after looking it up today they can also be referred to as Pups and Cubs, both of which completely escaped me on Sunday night! So Thanks Rachel for putting me out of my misery! It was one of the cutest things I have ever seen.

I have also added a few new blogs to my blog lists which are very interesting and well written so if you have a moment please take a look at them.

I would also like to say hello and welcome to those of you who have found me through Twitter. In the last week I have made lots of new contacts in the POTS and EDS world and its been great learning about every ones journeys with their conditions.

I have to also extend a warm welcome to those of you who have found my blog through Facebook and the disability pages I have become involved with in the last few weeks.

Not forgetting my long term followers who have stuck with me through thick and thin. Thank you.

So how am I doing? I would put myself in the OK-ish bracket at the moment. Sunday night was hideous and I didn’t sleep until gone 2am due to not being able to get comfortable due to the back and hip pain. Luckily earlier in the day a friend of ours AC had brought over his TENS machine and it was an absolute god send. I couldn’t believe how well it worked. AC says I can borrow it for as long as I like, which is excellent as this back pain is going to wax and wane now.

 I learnt an important lesson on  Sunday which was  I need to be more proactive taking painkillers and not see it as some sort of weakness if I need to take medication to help me cope. No one has a go at a diabetic for taking insulin, so why all the negative attitudes surrounding painkillers? Its come to the point now where I can no longer grin and bare it. I need painkillers to be able to perform the most basic of tasks as without them I am no longer able to. I am trying to avoid things like morphine as once I get onto those I will eventually get used to them and eventually they will no longer work. I do need help at the moment dealing with breakthrough pain so I have booked a Dr’s appointment for next Monday. Despite my loathing of going anywhere near the medical profession.

The pain has reduced considerably, when I say that it doesn’t mean I am without pain. It means it as a level where I can still function. I can no longer remember a time when something didn’t hurt. Its probably easier for me to list the body parts that don’t. Most days the pain will start either by actually waking me up or a few minutes after waking. I am trying to work out what it is I am doing that is triggering off my back and to see if I can avoid it. However my back can go just sitting on the toilet and I can’t avoid that one! Going upstairs can also make it pop a disc and carrying anything heavier than a cup of tea can also cause problems. So avoiding activities that make it worse is becoming an issue.

Sitting is causing me a considerable amount of pain at the moment, lying down is OK as long as I am in the recovery position with my knee propped up on a pillow. So I am suffering for my art today whilst typing this! Standing is OK but then I have to do battle with my POTS, so its not something I can do much of or for any longer than a few minutes. I can’t go on like this hence my booked visit to see my GP.

So that’s all my news for the moment. I hope to post again later in the week depending on how things go pain wise.

I hope everyone has a good week and I will be back soon!

I wish…..

I wish that on rapidly approaching my 100th post I had something worthwhile and inspirational to tell you all. My mood is blue, my pain has been reaching 9 out of 10 – I actually asked Amanda a trainee medic friend of mine to amputate both my legs tonight, such was the agony. She refused on the grounds it would be too messy and I would moan about having to clean the floor later. She was right on both counts.

 For the first time in years I cried with the pain and managed to freak hubs out completely.

I’m not a screamer or shouter when it comes to pain. In fact people that didn’t know me would be hard pressed to notice anything was amiss. I go quiet, breathe deeply and barely move. If its really bad I will start to shake. If its worse again I will cry but its silent, no great body wracking sobs as I don’t have the energy and it hurts to move.

Even when I had a small bowel obstruction over ten years ago now, I slipped in and out of consciousness without so much as a whimper. I really do the British stiff upper lip thing quite well. I think it stems from childhood my pain coping strategy. From quite a young age I knew that my peers thought I was a wimp or a moaner as everyday some bit of my body hurt and I would tell them. (my family were great). I soon learnt that if you complained a lot even if it was the truth no one believed you. How could a child with nothing medically wrong with them hurt everyday?

A classic from my youth is when a teacher rang my mum to tell her I needed picked up from primary school because I had a headache. Her words went something like this “We have maths today and Rachel now conveniently has a headache”. That’s stayed with me for thirty years. Yes we did have maths which I hated, I have undiagnosed discalculia (sp?) (like dyslexic but with numbers couldn’t tell the time until I was 18!, but that’s another story otherwise you will know me as tangent woman!).

 As I lived a ten minute walk from school it was agreed mum would set off and meet me half way rather than me hang around for her. I set off staggering down the hill vomiting most of the way. By the time mother reached me I could barely stand. I was marched straight to the Dr’s where a bad sinus infection was diagnosed.I hadn’t felt the pain or discomfort of a sinus infection building, I only felt it when it got to the stage of vomiting with it. I know my mother took great delight in ringing the teacher to tell her it wasn’t a headache and it was absolutely nothing to do with maths. It also tells me that there is something wrong with the way my brain perceives pain. I think even at that age my brain was so accustomed to those pain messages it filtered them out until it got to a level where it could no longer ignore them.

Tonight I hid how bad it was for quite a while until I unleashed a four letter tirade on Frankie when he put his head on my lap. Hubs jumped out of his skin as I rarely shout or raise my voice when it comes to the babies. He then realised my eyes were streaming with tears. I hate the look he gives me when he is in total panic about what to do.The first thing he said was
“painkillers?”
“Took them an hour ago”
“Not working”
“No”
“What do you want to do?”
“Help me get upstairs, electric blanket and then Tens machine. If that doesn’t work I need the out of hours Dr”
“OK, we have a plan”
Hubs likes plans and he also knows I hate seeing Dr’s or visiting the hospital. Over the past four years my aversion to them has grown steadily worse. Its a vicious circle I admit I need them to help me, I won’t see them to tell them I need help, how can they help they aren’t mind readers. I know all that I just find it incredibly difficult to trust Dr’s when I have seen the very worst of them.

Other than that I’ve had a good weekend. Mum and Dad with their new pup Maggie came and visited me Saturday. Saturday morning whilst out accompanying hubs when he took the dogs out I saw a baby fox. They probably have a special name but I can’t remember it. It was about the size of a five week old weimaraner puppy, not that its much of a reference point for a lot of you. I’ve never seen one before so it was amazing! The beauty of nature is something to behold.

Plants in the garden are doing well and will get some photo’s on here as soon as I am able.

I also want to say a big thank you to my readers/followers and a special thanks to those of you kind enough to leave comments. They have really touched my heart and quite often I go back and read them when I am having a tough time. So Thank you xx

Insomnia

My old friend insomnia seems to be back tonight. I thought I had managed to shake it off as it hadn’t reared its ugly head in a few weeks and then bam tonight its back. Well I say tonight its technically morning. Its 2am and I have watched all the TV programmes I recorded earlier.

My Insomnia is strange I just don’t feel tired there is no desire to go to sleep. I have enough pain medication in my system to sedate a bull elephant but the switch in my brain is still stuck on daytime and hasn’t switched over to night mode.

Tomorrow or should I say today could go either way. I could feel really awful and have the shakes all day or I could feel tired but fine. Now its gone past 2am its not going to happen much before 6am if I do manage to finally flip the switch.

Everything is so quiet apart from hubs and the dogs all snoring away in the background. Its highly irritating as it seems to me they are showing off.  I know I should be sleeping.

Now I just need to find somethings to occupy myself with until I feel the urge to switch off.

I’ve plucked up the courage to share this picture!

I took this picture of my ptosis around a month ago. I hate myself in pictures. I am not at all photogenic and since becoming ill I am no longer Kate Moss’s body double ! (not that I ever was). So for all of you struggling to work out what ptosis is and what it looks like here it is….



It’s not a technically brilliant photo as I had to take it myself whilst sat in the car. In this picture both eyes have ptosis just one eye is more badly effected than the other. Its not just my eyelid on the right eye that is effected as you can see the eyebrow and the right side of my face is starting to sag. To compensate and try and open my right eye you can see my left eyebrow is arched, giving me a kind of surprised look on one half of my face. However as you maybe able to see my left eyelid is also starting to droop as the lid is starting to line up half way through my pupil. Go and check out your eyelid position in the mirror and you will see the whole of your pupils not just part of it. Later that evening, well actually around 30 minutes later the left eye was completely closed leaving me blind unless I taped my eyes open. Its not comfortable to do that and although both eyes would be open my vision is completely blurred. Its like the muscles are so tired they can no longer focus to see properly.

I have ptosis everyday in my right eye to some degree. By the end of the day my eyebrow starts to droop and my eyelid starts to obscure my pupil. Some days I wake up with it, most days it just develops through the day. I have a day where its completely closed at least once a week and a couple of times a month both eyes are closed due to it.

When I have ptosis I have double vision and my depth perception is altered, so I can not see how near or far things are. It makes things like pouring a drink quite a challenge, or negotiating furniture a minor obstacle course!

There are a few things that will make the ptosis disappear like magic. One of them is taking a drug called Pyridostigmine Bromide (mestinon) which is used in the treatment of the condition Myasthenia Gravis, an ice pack applied to my eyebrow will also make the ptosis disappear for a few minutes. This only works in the disease Myasthenia Gravis, its believed it cools the neuromuscular junction. Medical studies have proven that this is the only type of ptosis it works on and this test is used in the developing world where they do not have access to western medicine.

 I will let you draw your own conclusions.

I hate being out in public when my face looks like this and tend to hide behind dark glasses. Its bad enough that when it happens I can’t see properly but I have also been verbally abused by people who I can only describe as mentally and emotionally stunted. Some people including Dr’s think it is perfectly acceptable to make a joke out of the way my face looks when this happens. I don’t find it humorous I find it incredibly distressing and it has severely knocked my confidence.

Many of you will have no concept of how hard it has been for me to post this picture, its given me a few sleepless nights contemplating the pros and cons of exposing myself in this way. But I am in this for the long haul and the point of my blog is for people to understand and you can’t understand if you only have part of the information.

Thank you