Medical arse covering

I know that this blog is called the Myasthenia Kid and yet of late I barely mention any Myasthenia like symptoms. Let me assure you I suffer almost every day with MG like symptoms. I think after my treatment at the hands of Doctors in 2009 and 2010, I just shut down. Those doctors who were the supposed experts did such psychological damage to me that I struggle even now ten years later to vocalise when the MG symptoms strike.

Currently the ptosis I suffer with ( daily to varying degrees) has been diagnosed as idiopathic hemifacial spasms ( and they ignore the fact that mestinon cures these “spasms” in around 20-30 minutes). The treatment suggested back in 2017 was Botox injections, funnily enough though no one has stepped up to do these injections, could that be because 1. I don’t have spasms my face is paralysed and 2. Botox and MG are contraindicated?

Its like the home oxygen supply I have,  apparently I don’t have any issues with my breathing well other than the suggested breath holding by the twat of a pulmanologist I saw ten years ago….. yet I have an oxygen cylinder and an oxygen concentrator. Do you see the running thread here at all? One might suggest there was a hell of a lot of ass covering going on here.

I have breathing problems on quite a regular basis. A lot of the time the shortness of breath can be alleviated with a booster dose of mestinon… you know the tablet that doesn’t work. On my very bad days I will use my oxygen concentrator. Tonight maybe one of those nights. I know why this is happening it is because I have been pushing myself so hard physically the last few days trying to get jobs completed. It’s the first time in around a year that I have done this much and as usual I have totally ignored the fact it will knock me on my ass.

Due to me having PoTs I take mestinon (also known as pyridostigmine bromide). It raises standing blood pressure, I can’t say that I have noticed any effect on my blood pressure but it really helps with the Ptosis and muscle strength which I lose as the day goes on. But obviously the muscle strength thing is all in my head and the ptosis resolving is the placebo effect. I just think it is another case of arse covering.

Some days when things are really bad the mestinon does nothing. It doesn’t help the breathing or the ptosis. Those days I stay in bed and pray that I don’t need the hospital. Years ago I told Jay no more trips to hospital unless I was unconscious or I asked specifically asked. I don’t do hospitals anymore because I always get treated like I am a time waster who “thinks” I have Myasthenia Gravis. 

Even though I have multiple conditions now diagnosed, some doctors still ignore all that – even with the positive test results and jump straight onto the fact that I was diagnosed by a neurologist with somatiform disorder – notice I say a neurologist. Which is a bit like asking a cardiologist to do spinal surgery.  They also like to bring up my mini breakdown in 1999 – yes 20 years ago and use that as a reason why I am unwell. Despite the fact I went many years without any depression due to the hard work I put in through two years of counselling and CBT.

Yes at the moment I am suffering with depression and anxiety which I would consider perfectly normal considering the losses I have dealt with in the last two years. I have lost 4 friends, my grandmother and my three dogs. Obviously Frankie and Mollie passing within 7 days of each other really knocked me back. I ended up speaking to a doctor last week – more on that in a second, and had my antidepressant dose raised and was given some diazepam for when I can’t get out of the panic cycle. Thankfully since the antidepressants have been increased and I have the diazepam I have been feeling quite a bit better. It’s just as well as I have to be honest I really wasn’t coping, I was doing a great job of masking it and some people can’t get their heads around high functioning depression. Believe me I can keep going even when I feel dead inside. It takes a lot for me to finally crumble. And last week it finally happened.

Anyway a slight diversion just for a laugh, I am on the phone breaking my heart to this doctor, saying about the panic attacks, the anxiety, the grief and the depression. I kid you not I was asked if I had considered taking Kalms (  see what they are here ) and then the piece de resistance had I tried rescue remedy (here ) if I hadn’t been breaking my heart I would have launched at her. What the hell was she doing ??? look at the medications I am on does she not think that I am way past some fucking Kalms and 3 drops of rescue remedy? I couldn’t get off the phone quick enough, despite that she still managed to bang on about using meditation. I pointed out it doesn’t work for me and leaves me feeling worse.

I do a guided meditation when I can’t sleep and my mind goes nuts with useless information flying through it. It makes me seriously worry that if someone was suicidal this berk would have offered them St Johns Wort and wondered why they hung themselves. Obviously the last sentence isn’t funny its a genuine concern, when depression isn’t taken seriously and the problem here was a locum gp who wasn’t aware of my magnificent mental health history, they may try to fob someone off with mindfulness. Mindfulness is fine when people feel a bit down or stressed but it won’t treat someone who is very / severely depressed. Same as rescue remedy will not treat Generalised anxiety disorder or OCD. It is only because I can and do speak up for myself that I got what I needed, increased meds and some extra meds. I knew I just needed a bit of breathing space to put myself back together. Had I not forced the issue, well I don’t want to think about it really because I was teetering on the edge of becoming seriously unwell.

Anyway I digress, don’t I always. The way I have been treated by the medical profession especially any time that Myasthenia Gravis is raised has left me with a fear of doctors and a phobia of hospitals. I have spoken to so many other people with chronic illnesses who say the same. We stop going to the doctor because we know we will be fobbed off.

Take the doctor in July who told me the pain in my neck and the numbness in my arm was stress. In December I went back, because I was now losing my grip and the numbness was worse and I am told I have an impinged nerve, I need physio but the doctor believes I will probably need surgery to decompress the nerve. Thankfully I have avoided that by paying to see my private Physio. Someone who works with me and lets me know that she understands I know my limitations and she can’t push me.

So no the MG symptoms haven’t disappeared I doubt they ever will. They will just be a host of additional symptoms that no one is prepared to say without a positive SFEMG or blood test what it is and lots of medical arse covering will take place.

Me on Monday afternoon. Does this look like a spasm to you or paralysis? As you can see both eyes are trying to close. My right pupil has drifted to the side of my eye socket. The left eye is desperately trying to stay open by pulling the eyebrow up but as you can see the eyelid is trying to close. The fuckwittery I have to deal with is outstanding!

Hello Darkness My Old Friend

Last week was a bit of a nightmare. I was so fatigued it was ridiculous. I was sleeping hours but still felt like a zombie when I awoke. My legs felt like they were made of lead. My brain was sending the messages to them to move but they would refuse, causing me to fall over. When I could move them they felt as if they were made of lead. Climbing the stairs (which I limit anyway) felt like I was scaling mount Everest. Then on Tuesday afternoon, I recognised a feeling that I haven’t had in a long time. My face, eyelid and eyebrow were beginning to drop. I ended up going to bed for a lie down and slept for three hours. When I awoke the feeling was gone and I was relieved to have dodged a bullet. But I hadn’t, when I woke up on Wednesday morning this had happened.

 

 

Now I have a level of Ptosis everyday, normally unless you were specifically looking for it you wouldn’t know it was there. My eyelid droops to where the pupil starts to become obscured. That level of Ptosis I can cope with, it doesn’t affect my vision and it doesn’t tend to make me feel unwell.

Wednesday morning I woke up feeling horrendous, arms and legs both felt like they were made of lead. I was dizzy and due to my eye being nearly completely closed I couldn’t see very well. My forehead felt as if it was being ripped in two, with my left eyebrow arching in an attempt to keep the right eye open, only it was failing miserably. After a couple of hours I decided this really wasn’t worth the hassle of trying to stay out of bed. At 8am (I had risen at 6am) I gave up, took some HuzerpineA (like a herbal Mestinon as I can’t tolerate the real stuff) and set my alarm for 9am hoping when I woke up the Ptosis would be gone.

 

I gave myself an hour as like Mestinon this stuff takes about 20-30 minutes to get working. Plus I was also having a friend over, so needed to be washed and dressed before she arrived. I naively thought an hour in bed would be the magic cure. What an idiot! When it’s bad like this even proper Mestinon can fail to work. I should have realised when my alarm went off, that this was not a good day. I never fall straight back to sleep after being up for a few hours. I messaged the friend to advise them I would have to cancel, something I hate doing as it means I have knackered their plans for the day. She was absolutely fine about it but it doesn’t stop the guilt over cancelling. I text my husband to let him know I would be staying in bed for the day and that I might need him home if things got worse. I then went straight back to sleep.

 

Most of Wednesday was spent asleep if I am honest, I have a few brief periods awake mainly to get something to eat and have a cigarette. The fact that I was so utterly incapacitated scared me. This reminded me of the bad old days when I first got sick in 2007. How I had gone from working full-time to a year later being ill-health retired. I hadn’t been this sick what I call MG sick in years. Probably close to nine years, so you can imagine my shock, when this came totally out of the blue.

 

Thursday I woke up feeling an awful lot better but then by the afternoon was back in bed on home oxygen. I couldn’t take a deep breath in, as my chest just felt like it couldn’t expand. This really scared me as I have been blue lighted to hospital barely conscious due to breathing difficulties. This was exactly how it had started in 2008, I tried to walk across the lounge floor but stumbled as my legs wouldn’t work properly. The following day whilst hubby was out getting some shopping (helpfully forgetting to take his mobile phone) I had collapsed unable to take a proper breath in. I’d had to call 999 myself, trying to stay calm whilst the supply of oxygen in the house felt like it was running out.

There have only been a few times in my life I have been utterly terrified by my symptoms and that was one of them. I ended up being wheeled straight into resus, placed on oxygen running at 15 litres a minute and I still had very poor oxygen saturation. They  discussed with me about putting me into a medically induced coma and putting me on a ventilator. They wanted Jay to be at the hospital, I now realise it may have been to say goodbye, at the time I was oblivious and said he had to look after the dogs. I look back now and it moves me to tears. I wasn’t frightened at the time I was just exhausted from not being able to breathe.

 

I had all this running through my head again on Thursday, thankfully within two hours I was feeling much better but I had to spend the rest of the day in bed.

Gradually I have improved and back to my normal (but limited) levels of activity. However I am still having days where my arms and legs are refusing to work the way that they should. Today I was trying to do stuff around the house and I kept falling over my own feet as they felt as if they were stuck to the floor every time I went to move. I have started choking again (frequently) on fluids, something which hasn’t happened in a really long time.

It’s frustrating that despite in many aspects of my health improving a great deal, no more headaches, much less joint pain since giving up dairy, that this has started up again after leaving me alone for such a long time. Thankfully I have a hospital consultants appointment coming up at the end of next month and I will be able to discuss it with him then. I think it maybe time to bring up the possibility of Myasthenia Gravis again as seronegative MG seems to be much more accepted than it was ten years ago.

 

This song was going through my mind the whole of Wednesday and Thursday

 

 

A general update

I know I can be terribly annoying talking about the various new things happening medically but then never going back and updating you all. Unfortunately I have the memory of a goldfish, my husband will attest to that. I forget things, I continually ask the same questions  etc. It must drive him nuts some days but he patiently answers those repeated questions.

Octreotide:
In April 2014 I was admitted into hospital for a medication trial. Luckily I escaped on the second day, the hospital setting drove me to the brink of hysteria. This was triggered by awful experiences of hospitals in the past.
I was started on 0.25mls Octreotide three times a day before meals. Whilst in hospital I suffered no side effects but with in a few days I was suffering from diarrhoea (neon yellow in colour!) and stomach pain. On the advice of my consultant I stopped the injections for a few days and then restarted them but just once a day. All went really well – it stopped my postprandial episodes, until June which was when I started getting repeated bouts of cellulitis. I decided that I would stop the injections whilst I waited to get rid of the cellulitis. I had four bouts of it in total, by the end of July I had simply got out of the habit of injecting and it fell by the wayside. My postprandial episodes had lessened so I just didn’t use it.

Last week as the episodes had come back with a bang I decided to bite the bullet and start using the octreotide again. I started off on a 0.2ml dose and that has gone really well. As there were no side effects I have increased this week back to 0.25ml, I had got up to 0.3ml before stopping it so I hope to slowly increase it back to that amount. So far so good, the weird thing is I can really feel it wear off with tachycardia coming out of nowhere once I get to the 90 minute mark after the injection. I see my consultant at the hospital in the next few weeks so I will update him them.

Fludrocortisone / Florinef:

I started taking fludrocortisone again back in February 2014 after the tilt table test sent my autonomic nervous system into free fall. Since then its been on and off until January this year when again I have taken another downturn health wise. I am currently taking two tablets a day which I find helps with the tachycardia and palpitations. It does zero for my blood pressure but if it stops the banging heart every time I move I am happy to take it. If I am having a very rough day I will increase to three or even four tablets.

Home Oxygen:

I still have my oxygen concentrator which is an enormous help to me….when I remember to use it. It is very reassuring to have the oxygen concentrator at home so that I don’t have to take a trip to hospital. There are several reasons why I use it, the first one is quite obvious I use it when I feel like I can’t breathe. This tends to happen if I am having tachycardia that wont settle even when resting. It is exhausting when your heart decides to run at a million miles an hour when you aren’t. It feels like you can’t catch your breath, so the oxygen just makes it a lot easier. On occasion it will slow my heart down as well so a double bonus. I also use it when I have a bad migraine, the oxygen seems to reduce the length of the attack and ease the severity of the pain. Since being on the fludrocortisone again I have had a lot more headaches an unfortunate side effect so I find I am using the oxygen more and more.

Back Pain:

Overall my back pain is 100 times better than it was back in August when I could barely get out of bed. I still have bad days and semi bad days usually when I overdo things however some days I can just wake up in agony. I am not brilliant at doing the Pilate’s I seem to have fallen out of the habit. I really need to get back on the case.

My back pain has also moved from being predominantly my lower back and now can be anywhere from the base of my skull down to my tail bone. For the moment I have stopped going to physio therapy as I really don’t believe that my back will get much better than it is now. I completed Pilate’s from the September to the December at a cost of £70 a month. We don’t really have the £70 a month to spend. If I can’t keep my back pain at the level it is now I will go back.

Bladder Problems:

My bladder has been doing much better since I have retrained it to wait for longer until I empty it. So far no infections which was my main concern as my going frequently was a habit I had got into due to recurrent infections. 

I have not cut out caffeine, fizzy drink, artificial sweeteners or the devils juice. This was my decision and just because I have done it does not mean that this decision would be right for you should a medical professional advise you to do the same. I knew that my problems were not related to my consumption of these items but down to a neurological problem. The bladder nurse was trying to treat me for an over active bladder due to me urinating over 26 times in a day. What she couldn’t quite get her head around was that if you drink between 6-7 litres a day you are going to pee more than the national average.

I am being taught how to self catheterise at the end of this week…..I am so looking forward to it. At least this is happening in my home and not in a hospital ward. Knowing how to do this will be an enormous help as my bladder is still refusing to empty properly or completely stop working. I am hoping that by being able to empty my bladder in this way will mean I will not need the district nurses coming around and fitting a catheter with a bag in future. Time will tell. I am sure there will be a blog post following this hilarious fun-filled episode.

B12:

I was diagnosed with a vitamin B12 deficiency at the end of the summer. I had the standard 6 injections and then was supposed to be given the injections every 8-12 weeks. After 6 injections it was clear that I needed far more B12 than was being offered on the NHS (despite the NICE guidelines informing doctors of the correct practice). As soon as the B12 injections wore off my neurological symptoms came back. So since then I have been initially injecting every other day. I then spaced that out until every 3 days then every 4 days and now I am down to once a week. Any longer than that and the burning sensation in my left leg and foot comes back. I was obviously a lot more deficient than my B12 test accounted for.

Overall Health:

As I have a hospital appointment coming up in the next few weeks to see the consultant who looks after me for PoTs I have been thinking long and hard about how I am doing. I haven’t seen my Dr since April due to a massive balls up within the hospitals admin department. Hand on heart I can honestly say my health is slowly getting worse each year, which is upsetting and a little depressing. I don’t know where this decline will end and that is scary. No one seems to know or discuss it. 

I am now starting to suffer from random drops in blood pressure when sitting. I am used to my blood pressure dropping like a stone on standing and have coping mechanisms in place for this. What alarms me about this new symptom is it is happening when I sitting with my legs raised. I will be reading or using my Chromebook and all of a sudden the screen will seem to scroll up or down. This is actually my eyes rolling in my head, within a few seconds my heart will feel funny. The only way I can describe it is that I get the sensation you have when you are falling in a dream, only I am awake. The attacks can last for just a few seconds or several minutes. I may get one in isolation or repeated attacks throughout the day. I know that whatever it is that is happening is causing my blood pressure to drop as I have been lucky enough to capture an episode on my BP monitor. This is just crazy and when I put some feelers out within the PoTs community only one person replied and said their son suffers from them.

I worry about these attacks as I have no warning that they will happen. For the moment I have placed myself on a driving ban until they have stopped for a few weeks. I feel like I am hanging onto my independence by a thread. Losing my driving licence – even though I only drive a few times a year would devastate me. Obviously having an accident and hurting other people would devastate me more. It is just that I feel that this illness has taken so much away from me I would hate to lose yet another thing.

Weight loss:

I am still sticking to my diet and I will admit it has been very hard at times. I have lost 21lbs since starting and I am just 3lbs away from what I weighed on my birthday in November which is what my first target was. I still have a long way to go, I am not even half way yet. I have found that reading my cards that I have made up with positive affirmations on them reminding me of the reasons why I want to lose weight etc have been really helpful especially on the days when I am finding it a hard slog.

One last quick update:

 This one is regarding my mum. Those of you who are regular readers may remember I wrote about the length of the waiting list for my mums spinal surgery. She still hasn’t had the operation and has deteriorated further. She saw her surgeon last week after her gp wrote to the surgeon explaining how badly my mum was now doing. Her case has now been marked as urgent and she has completed all her pre-operative tests. She is now just waiting to hear when the operation will take place. Fingers crossed it takes place soon as she really needs it.

Dear 2015

This post was nearly ready to be published last week when we had the devastating news that Willow had a tumour in her breast, should the X-rays showed that it had spread, we would have to make the hard decision to let her go. Due to the intense emotional distress this caused both hubby and I, we decided together that I would skip a week of the blog until we knew what the future held, life with or without Willow.

 I am happy to report the tumour hadn’t spread and it was successfully removed. The tumour was a mixture of benign and malignant cells so from now on we will keep a close eye on her. So here it is the post I prepared before even knowing that 2015 was going to be a roller coaster.

*  *  *

Dear 2015,

I know that you are just a few days old but I wanted to give you a heads up, 2014 was a bit shit health wise if I am honest and I would sincerely like it if you would give me an easier 12 months. Although with awful PoTs symptoms starting on New Years Eve, I think its clear what your evil intentions are.
2014 was going swimmingly until I had a glucose loading tilt table test to confirm the diagnosis of postprandial hypotension in February. However it also changed my diagnosis from PoTs to severe Autonomic Dysfunction making my diagnosis even harder to explain to the myriad of medical professionals I would encounter during the remainder of the year.
Following the TTT my health took a massive decline. Just five days after the tilt table test (TTT – for short) I was bed bound and hooked up to my oxygen concentrator 24 hours a day for a week. I was inducing stress levels in my husband that I didn’t think were possible to survive without provoking a heart attack. No one had any answers, all my gp could suggest was going back onto fludrocortisone (florinef for you in the USA) and increasing my fluids. My hospital consultant was on holiday, so my gp and I were winging it. As always my main aim is to stay out of hospital because dealing with idiots when I am unwell drives me nuts, even well-meaning idiots. When I say idiots I mean the ones that although well-meaning presume they are experts in my condition after 5 minutes on google.
Thankfully that time I avoided a hospital stay, the next admission in April 2014 was planned. This was for a trial of the drug Octreotide to see if I could tolerate it and if it prevented my postprandial episodes as I refer to them as. The drug worked but the whole trial was farcical, with me being discharged after only injecting the drug once myself and arguing continually with the nursing staff who kept trying to give me the drug hours before meal times which as I later found out due to my own mistakes would have produced horrendous hypoglycemic attacks. I was also discharged with very little information and with my gp having no way of ordering the syringes or needles I needed to inject the drug because they weren’t available on the pharmacy list which gp’s can order from. This took several months to rectify, oh and I have failed to mention that I had no information regarding the disposal of the sharps bin either. As I said farcical.
May and June 2014 saw repeated bouts of cellulitis and I was very lucky not to need I.V antibiotics to sort it out. I had blood tests and antibiotics coming out of my ears but no cause for these repeated infections was ever found. I am just lucky I guess. I had no appreciation before hand how ill cellulitis can make you feel. The first bout started with what we presume was a spider bite on my knee, the second bout started after I had a manicure and the third and fourth bouts happened after I was bitten repeatedly by mosquito’s. I was very poorly but as always I chose to ignore it as I have found burying my head in the sand always works well. Spot the lie.
The end of June was equally dramatic with Acute Urinary Retention occurring on the 20th June resulting in me being admitted to hospital on the 21st June with a blocked catheter. If I thought I had lost my dignity when having a smear test (PAP test in the USA) in the past I was in for a rude awakening when having catheters fitted and subsequently removed. By the time a catheter becomes necessary you no longer care what it will take to relieve the agony of an overly full bladder. I have very little recollection of these events and I kind of understand women who say they forget the indignity and pain of childbirth. I think I have blocked the memories from my mind. Only to be remembered when I read the blog posts these incidents are contained within.
So six months in and 2014 had been one of the most eventful years of my professional sick persons career. So 2015 I would be grateful if you could keep the drama to a minimum. I don’t mind drama as in I have a winning lottery ticket or a National Newspaper wants me to write a regular column for them, that’s fine. I just don’t want the health drama for me or any of my loved ones. There is too much drama in the world already without adding a whole new level of shitty health problems.
The following six months weren’t remotely better, they just presented different challenges. From March onwards the back pain I had been suffering with since 1999 decided to ramp up a gear. I found out in September I have arthritis in my spine and a flattening of one of my discs. My palpitations, feeling faint etc have been worse for the last six months which has meant me staying on the dose of 3 fludrocortisone tablets a day. The steroids help but the bring other issues such as sleep problems and constant hunger. My weight has gone up and down like a yo-yo in the last 12 months. An outsider may think “weight should be the least of your problems” and I agree it should but I am so unhappy when I can’t fit into my clothes. I can cope with my health being awful as long as I don’t put on lots of weight. My weight seems to be the final straw. With my back pain being as bad as it was I spent much of the summer in bed in vast amounts of pain. With further reduced mobility I ended up putting on weight.
One good part of 2014 was finding out the answer to why my back was painful and discovering that gentle Pilate’s could strengthen more core muscles enough to alleviate that pain. I found joy in completing the exercises and used my Pilate’s time as me time. I could relax and found myself feeling calmer…..until my knees really started to hurt. I think the strengthened core muscles changed my gait which then altered the pressure on my knees or maybe the pain in my back was masking the pain in my knees. It doesn’t matter because in December 2014 I could add early onset arthritis in my right knee and  possibly all of my fingers.
December 2014 was eventful due to another bout of Acute Urinary Retention and a urinary tract infection to boot. So again 2015 I beg of you don’t meddle on the health front please. The last 12 months was hard to deal with and I am no longer bouncing back like I used to. My husband really can not continually cope with this level of stress. As a result of my declining health he has now put on several stone in weight as he is a stress eater. I want him with me for a long time, so please lay off me for a while so that he feels he has some kind of control in his life.
Last year I made a huge list of New Years Resolutions, it was the first time I had done so for many years. Looking back at the list I realise I didn’t accomplish any of them due to the health issues. That was a bitter pill to swallow.
One of my resolutions wasn’t affected by my health, I wanted to get back into creative writing…..I didn’t, I got back into blogging after an 18 month break. It has been one of the most rewarding things I have done. I have made a very special friend who I would never have met without my blog. I was nominated for a Wego Health Activist Blog award and I more than doubled my readership in the space of ten months. Something I am extremely proud of.
So if I maybe so bold 2015, I have provided you with my personal wish list for the next 12 months. I know you can’t cure my numerous medical conditions but you can be kind.
– I feel its time you gave me a break on the health front, just keep me ticking along with the conditions / symptoms I am used to. Don’t go throwing me any curve balls because I really don’t think I have the energy to cope with them.
– Please limit my exposure to idiots in the medical field. I have been worn down by the constant exposure to them last year. Let someone else have them for a change or just educate them a bit better before you release them on the general public. I can’t be the one to educate them all the time.
– Before one of my well-meaning acquaintances sends me the link to a blog where someone cured their PoTs through adopting a sugar-free, Vegan diet may you give them a change of heart or make their Internet connection go down until they decide I have probably already seen it several times.
– If they do send it let me receive it far more graciously than I did in 2014 but then again maybe not a little sarcasm never hurt anyone.
– If I do go into Acute Urinary Retention again can you make it on a day when I have shaved my legs and waxed my bikini line? It just makes me feel better to know that these are done if someone is going to be rummaging around in my lady parts.
– Please don’t let it be this year that my smear is due for the reasons above plus it is painful due to my retrograde cervix and dislocating my right hip when I adopted the “position” last time.
– If any insects or arachnids bite me this summer please let me avoid cellulitis and high dose antibiotics. By attack number 4 it got quite boring and the medication made me feel really nauseous.
– Please get my gp to admit fully that I have arthritis in my fingers. Seemingly them swelling up, being stiff and painful just isn’t enough proof when I already have arthritis in my spine and knee. Please stop him holding onto the belief that its my stretchy ligaments causing the problem and admit it is EDS causing early onset arthritis.
There are lots of things I could ask of you 2015 but I really don’t want to appear greedy. If you could just make it a smoother ride this year for me and my loved ones it would be greatly appreciated. I know there will always be bumps in the road so let me face them as I faced the ones in 2014, with humour and wit.

 

“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!”

 

Thank You

I just wanted to do a quick post and say a big thank you to those of you who have read my blog and taken the time to leave comments. It really means the world to me to know you care so much about me.

I bit the bullet yesterday and took 60mg it worked within 20mins and lasted 6 hours. However I did have some stomach cramps and a lot of gas! Not very lady like I know! My vision in my right eye was still blurry but I could see well enough to get on with bits and bobs.

Today I’ve had ptosis but it was just my eye brow drooping which made me look like I had a lazy eye. I have had more breathing problems today and have ended up using oxygen for a couple of hours. I had the old MG feeling back where you breathe but just don’t seem to get enough air in to satisfy you. I took 30mg of mestinon which resolved the ptosis and made my breathing easier.

My tum is a bit raw from the mestinon this week. It is extremely unusual for me to take it more than once in a week. I only tend to use it if my eye closes completely, or both eyes close or I can’t catch my breath. I have ptosis everyday but its usually very slight and doesn’t close my eye just makes the lid droop, on those days I just tend to get on with it as believe it or not I actually don’t like taking tablets. It seems ridiculous for someone who takes over 20 tablets a day to say that, but I only ever take what I need. If I can do without the mestinon I don’t take it. Plus the side effects of mestinon are enough to put anyone off!

I can’t remember who suggested 45mg instead of 60mg but thank you. Why I didn’t think of that (slaps forehead!) I don’t know but I think that might be better than 60mg at the moment. Also special mention to Rachel again …..thank you for looking up EDS that is so sweet of you. Unfortunately it is a painful disorder that not only affects your joints but your organs as well. The problem I have is I get weak muscles from both the POTS and EDS which causes my joints to be unstable. Hence my spine popping discs out left right and centre. If I have MG as well, (which come on its highly likely) what chance do I have with that making the muscles weak also!!!

Thank you again Em, Shalyn, Rachel, Minxy for your lovely comments. Sorry if I have missed anyone out. Going to finish up here as getting short of breath again and Hubs needs to get my oxygen up to me. No need to panic this happens a lot. I will also be taking 45mg of mestinon as that helps as well.

Thanks again xx

And yes I’m still waiting…..

Its now been a week since Oxford contacted me and I am still yet to hear from them in regard to my admission for tests. I was hoping that I would go in March but thinking about it, it will probably be April due to the financial year starting and new budgets etc.

I’m also waiting to hear from Dr Y regarding my request for a referral to London to see the pulmanologist there. Why does everything have to take such a long time? My breathing has been an issue again lately and I have had a couple of days where I have had to use the oxygen to see me through.

I’m really tired today. Hubby had some friends around to watch the superbowl and my god they were noisey. We did warn the neighbours that we had people coming over, the walls on the houses seem no thicker than paper sometimes! Everyone is still alive after eating my chicken curry so I’m happy about that.

Feeling sad today as it is exactly a year since I saw these guys. Yesterday I got a glimpse into normal life, lost the anxiety that seems to be constant at the moment. I lost the anxiety because I could live in the moment rather than have too much time on my hands worrying about the future and punishing myself for actions in the past. Nine hours alone everyday with very little human contact will do that to you. I hate it the fact that every moment seems to be clouded by this anxiety, over the most stupid things. Most of the time I can talk myself out of it or distract myself. But with so much time on my hands it can be hard to do.

I sat here again this morning and thought is this all my life is going to be until I die? I get up watch TV or Read or go on the internet, waiting for phone calls from my Husband or mum. Other than that no human contact at all? Thats why I write this blog, I’m shouting out into the world hoping someone will hear me and acknowledge my existence. Though I know through experience there are many others like me. Having contact with them through the internet literally saves me.

Please don’t feel sorry for me, thats not what I want. I’m not sat here with tears streaming down my face. Its just this wasn’t the life I had mapped out for me. These things just happen. Just when I think I have accepted my fate gracefully I start to resent it again. I just think when I have enjoyed myself and been caught up in the moment the next day or week can be extremely hard. It magnifies the solitude.

I have to believe that one day it will be different. This is the worst time of year as its so dark, gloomy and cold. You dont really see anyone. In the summer I will be in the garden and it will be wonderful.