Side Effects

Some weeks I really struggle to come up with a topic on which to blog about. This is one of those weeks. In fact it was quite by accident that I remembered this morning that I hadn’t written this week’s blog post which is due tomorrow. Nothing like an unwritten blog post for you to find numerous jobs to do instead of writing! I have practically had to chain myself to the Chromebook so that something, anything gets written. Unfortunately this weeks struggle is due to my medication being altered.

The new dose of antidepressants has knocked me for 6, yes my mood has improved greatly but I am just exhausted 100% of the time. When I am up during the day I feel like I am working through a haze best described like you had a couple of glasses of wine with lunch except its 8am and you haven’t been drinking. I may get a couple of hours in the middle of the day where I don’t feel so out of it but then it quickly returns. That isn’t the only side effect I am having.

Mirtazapine is known that it can play havoc with a person’s appetite. On 30mg a night Mirtazapine did nothing to my appetite it neither increased it or decreased it. Now I am on 45mg a night and I am hungry all day every day. Its like being on steroids all over again. Despite being on my restricted calorie diet and the fact that I shouldn’t be feeling hungry at all, I am battling daily to stick with it. The hunger hasn’t subsided at all and thankfully although I haven’t put on any weight, it isn’t nice feeling hungry all the time and knowing that you can’t eat because if you do, you’ll be the size of a whale very quickly.

It’s also making my dry mouth worse. I already drink an excessive amount day and night due to a faulty hypothalamus. Something I was born with, but it is getting ridiculous as the amount I am drinking through the night means hourly to half hourly I am getting up to have a wee. Lack of sleep or broken sleep is not helping the feeling of having to push myself through a fog to function. In fact as I am writing this I am realising that although my mood has improved it is coming at too higher price. I haven’t even told you about the worst symptom that the increase of medication has caused and that is constipation – there I said it, I’m full of shite!!

My bowels have always been healthy and regular. The only times I have ever had problems going to the toilet have been due to codeine, one dose of that and I am horrendously constipated or when my bladder and bowel decide to shut down for 24 hours. So I was shocked to discover that a well-known side effect of Mirtazapine is constipation. I have had enough to be honest. After two days of struggling to go and feeling like the process was more akin to giving birth than having a dump I decided I better take some laxatives. Again something I have rarely taken in my life. Morphine has no impact on my bowels – which causes all my doctors much consternation because apparently that’s just not normal. But it’s true I have no problems going at all. But I am in agony due to the constipation the increased dose of Mirtazapine has caused. 

Of course I could have just eaten an excessive amount of Sula drops – the constipation would have been over much more quickly. Instead last night I took a mega dose of Senna. Now I have been 3 times but I am still in pain. I managed to go without any problems but I just feel like I am still full of shite and it is making me feel well crappy to be honest. 

Due to having a history of bowel adhesion’s and having to have them operated on I don’t tolerate stomach pain very well. It is a pain that really gets to me quite quickly. Maybe I am over sensitive to it but it is not something I am prepared to put up with. Taking senna every night is not an option as all it does is cause my bowel to be overactive for the next 24 hours and causes me adhesion pain. So the only solution to the issue is to stop taking the 45mg dose and drop back to the 30mg one.  I will obviously monitor how my mood is doing and see the doctor again if I need to but feeling better mentally is coming at too higher price and too much pain. I have been on the increased dose for over two weeks and if anything the side effects are getting worse and not settling. 

Another thing I have noticed is that it has taken away my drive to sew or embroider. I haven’t really wanted to do anything and I am having to force myself to do anything at all creative or to do something other than just sit in front of the TV for hours at a time. Most of the time I can’t even remember what I have been doing. It is a crazy situation to be in.

With all medications you have to weigh up the benefits and risks. The risks to me is that I am just not feeling like me on the increased dose. I don’t like feeling like this. Maybe what I have taken has been enough to get me over this sticky patch. I will soon find out but I know I am not willing to persevere with side effects that are this bad on so many levels.

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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!

Hoping for a quiet 2019

My last post was published on the 10th of January when I felt like my whole world had caved in. The last few weeks have been very hard, I miss Frankie and Mollie so much that my heart aches. There has not been a day that has gone by where I haven’t wept with the pain of losing them as suddenly as we did. To lose two dogs in 7 days is something I wouldn’t wish on my worst enemy. I wouldn’t have got through it without hubby by my side. In fact I would have probably given up completely had he not been here.

 
Due to the shock, upset, grief hubby has taken some time off work. He already suffers with anxiety and depression and to ensure he didn’t take a nose dive he saw the doctor and got himself signed off. He didn’t want to see anyone or talk to anyone. Losing Mollie hit him very hard as she was his dogs. Plus it was very traumatic for us over 24 hours where it became clear that she had suffered from a stroke and there would be no recovery from this. We nursed her overnight and made sure she wasn’t suffering. Right up until the end she only wanted her dad, whenever she was out of his sight she panicked. Jay stayed with her until the end as I had stayed with Frankie just the week before. To say our hearts were broken would have been an understatement.
 
I took a break from this blog as since the beginning back in 2008 the dogs have featured quite heavily in it. My Gravatar is me with Frankie, Frankie is the banner on WordPress, on Twitter his photo is my profile picture and its the same on Facebook. Although I have managed to change my about me pages on both blog platforms, I can’t remove his photo from any of my social media profile photos.  It feels like a huge chunk of my life has just vanished. Life as I knew it was taken away from me in the space of 7 days. I never knew I could feel so utterly broken by the passing of three dogs in just a little over the year.
 
For a few years Mr Myasthenia Kid and I had talked about what would happen when we no longer had any dogs. Initially we had said we would get a Labrador ( black) then we talked about a Beagle and also a Bracco Italiano. However for the last few months I had said I didn’t know if I wanted another dog, I knew losing our last two Weimaraners would hit me really badly and by getting another dog meant at some point in the future I would have to go through the pain of losing it all over again. Jay was not having any of it, he said that I was already completely socially isolated and without a dog I would have no company at all. He felt it would be very damaging to my mental health. He was right, as 7 days without a dog in the house were the worst thing ever. I missed everything about having a dog, the cuddles, the mess, the unconditional love, someone to have silly conversations with.
 
By the Sunday after Mollie’s passing we decided that we would get another dog and we started looking on-line for Labrador puppies. I had to give myself a crash course on Labrador’s having not ever owned one. I located several breeders who had litters on The Kennel Club Website. Luckily one lady immediately responded to my email and told us she had two male yellow labs for sale. Obviously we had originally said we wanted a black lab but by this point it didn’t matter what colour it was. We needed our house to feel like a home again, we were both distraught and sinking fast. We arranged to travel to see the 2 pups available the following day.
 
The rest is history, we now own a 9 week old Yellow Labrador called Dembe. We chose his name from the TV programme the blacklist, it means peace. Which you will probably agree we need by the bucket full. Dembe came home with us on Friday 11th January. You can read all about him   here as I have started his own blog for him. I will from time to time have photos of him on this blog but it is much easier to have all the news about him on a separate blog. Every Monday I will give a run down of what he has been up to the previous week. 
 
Some of you may be judging us, that we got a new dog too quickly or that we didn’t love our other dogs that much because we replaced them with Dembe. Dembe is not and has never been a replacement. He is an addition to our household. He is very much-loved for the dog he is and will become. Anyone who thinks any less of us for this can just fuck off as far as I am concerned, your opinion is of very little value to me.
 
So whilst I took a break from here, I have been setting up Dembe’s blog. I managed to keep writing which out of all the things I do creatively was the only thing that I could keep going. I hadn’t been able to sew since Mollie passed away. I managed on the 16th January after a break of nearly two weeks to sit and do a small piece of embroidery. Mainly to ensure that Dembe wasn’t scared of the noise the machine made. The only thing that has freaked him out so far has been the ironing board and it does the same to me if I am honest.
 
My health has been hit quite hard by the sudden turn of events. I have suffered vertigo, continuous headaches, back spasms, Eczema, migraines and ptosis. As usual it a few days after the event before I started to go down hill. Thankfully with Jay off work we have been able to manage Dembe’s care and socialisation process. To be honest without him I would have crawled into bed and never come out again. This little chap has saved us both. The lady that we are friendly with at the vets ( who had a soft spot for Frankie) called Dembe our miracle dog. She knew how much our lives focused on our dogs and also knew that without a dog in our life we would fall apart. 
 
So many people have told us that we have done exactly the right thing. It doesn’t mean that we loved our Weimaraners any less, it is because we loved them so much that we had all this love to give to another dog. 
 
Dembe has bonded with us both. He is such a happy, laid back dog. His tail wags continuously. Everyone who meets him falls in love with him. I thought at one point after Mollie had passed away that Jay looked like he was going to drop dead from a broken heart. He was just an ashen colour. I have seen Jay poorly many times but this was the worst I had seen him look for a long time. Since Dembe’s arrival he is looking so much better, we both feel like there is a future in front of us. In the immediate aftermath of losing both dogs it felt like we were staring into the abyss .
 
I am hoping that my health stabilises shortly, it is going to have to as Jay goes back to work from Monday 21st and it will just be me and Dembe. However Jay will be coming home at lunch times to help with feeding and toileting. He still has a few weeks until he will be able to go out for a walk. Whilst Jay is home though I am trying to take it as easy as possible. Jay has been doing everything for me as usual.
 
2018 ended in a way that I didn’t see coming and 2019 started in a way we never envisaged. All I can hope for is a quieter year for the rest of 2019.
 

 
 

 
I will never forget the love that these three beautiful loyal dogs gave me. Run free my darlings, we will miss you everyday for the rest of our lives.

The last post of 2018

As we are now rapidly approaching Christmas, just a week away as of writing this post, I have decided that this will be the last post of 2018. A year that I will be particularly happy to get rid of for reasons too numerous to mention. I will be giving myself a little break from blogging and will be back on 10th January 2019 which seems a date massively in the distance but in reality is a mere three weeks from the date this blog post is published.

 I haven’t taken this long of a break for many years but some times we all just need to be in the moment and self-care. I always get incredibly stressed around Christmas, it’s not something I massively enjoy as it’s built up to be this wonderful, magical thing but I actually find it quite a lonely time. Hubby gets very limited time off work and he’s back in the blink of an eye. This may sound a bit baa humbug to some but I am guessing I am not alone in feeling this way about Christmas, as in it promises much and delivers little.

I always get incredibly wound up in the run up to Christmas, I worry things won’t be perfect, all the glossy magazines and TV programmes sell the belief that if you aren’t making absolutely everything from scratch, food, decorations, wreaths etc then you are an abject failure. In the early years of being sick I would work incredibly hard trying to ensure Christmas was picture perfect. I would make the whole Christmas dinner from scratch, I would be utterly miserable and stressed out by the sheer enormity of the task and most of the time I was only cooking for two. When I am stressed I get snappy so the knock on effect was that hubby and I would spend the whole of the Christmas dinner cooking time sniping at each other and taking offence at every word uttered. It was no fun at all. The food was absolutely delicious but was it worth the sleepless nights ( I kid you not ) and the marital discord, no way.

When in 2016 Christmas was approaching and I was suffering from a CSF leak, the stress was even worse. There was no way I could spend 2 to 3 hours upright in the heat of the kitchen without it destroying the rest of the day. The CSf leak meant being upright induced the most horrific head pain that no pain relief would touch. I came to the conclusion that for once Christmas dinner cooked from scratch could take a running jump. There was no way I was destroying my health for the rest of the day for a meal that would take 20 – 30 minutes to consume. It didn’t make any sense to me at all. So hubby bought as much as he could pre-prepared  / frozen and we had just the gravy to make along with the carrots and sprouts. Ok it was never going to win a Michelin star but it was passable and when you are chronically sick or in chronic pain that is all you should be aiming for.

Perfection is a word that is bandied around by all of us but in reality perfection doesn’t exist and we shouldn’t all be wearing ourselves out trying to achieve a marketing concept. If your roast potatoes aren’t cooked in duck / goose fat who gives a shit? If your Yorkshire puddings are Aunt Bessie’s who cares? Who knows unless you tell them and my neighbours certainly won’t be rooting around in my bin trying to discover if I was the perfect hostess or not. The pressure we put upon ourselves to have the perfect Instagrammable Christmas is just silly!

Now the above probably makes me sound like I have my shit together and that I don’t get stressed about Christmas. Nothing could be further from the truth. This year I have just found something else to worry about. Believe me if there is something I can find to wind myself up over I will and do. I just don’t get stressed about Christmas Dinner – well I might a little bit as I have to work out the timings for everything and supervise Mr Myasthenia Kid in the kitchen whilst falling over two dogs who think any food in the kitchen is fair game and only being cooked for their enjoyment.

This year I have gone down a wildly different route for Christmas presents, as in due to my new-found skills I have made the majority of them for family and friends. Initially I felt very smug about the fact that I could utilise my skills this way and wrote out lists of gift ideas and set about working my way through making them. It has proved stressful and quite difficult at times as I have battled this trapped nerve in my neck. The issue this year has been that due to the fact I have made all the gifts or the majority of them, I have panicked that people will think I am cheap.

I have found since I started that people fall into two categories, category one – handmaid equals cheap, therefore you shouldn’t charge a lot of money for any item you make. Basically they want an artisan look for pence rather than the actual cost of producing an item or category two – a basic understanding or full understanding of the price of materials, skills involved and appreciation at the fact you have spent your spare time making them a unique and individual item. It surprises me how many people fall into the first category, when you buy cheap you are exploiting another human being. Maybe that human being lives on the other-side of the world and works for peanuts so that you can have your item at a rock bottom price? If you can live with that, that’s fine.

Because this is the first time for me making gifts I don’t know what category a lot of my friends and family fall into. I don’t know if they will be making snide comments about me being a cheap-skate or if they will like the items I have made. Due to this I have probably over gifted as I don’t want them feeling short-changed. In effect instead of spending an online choosing gifts that they may not want or need or maybe thrown away, I have managed to create days of work for myself ensuring everyone feels special due to the gifts I have made them.

So yet again as you see I have managed to find something to worry about. Thankfully it is just worry and not full-blown anxiety. My anxiety levels have dropped considerably from where they have been the rest of the year, this is my normal level of worry. And to be honest if I had bought gifts I would still be worried about what people thought of them and me . So nothing has changed really.

Thank you to everyone that has read my blog posts over the last ten years, can you believe this little blog has been going on and off for all that time? Thank you to my new readers who joined this year and have provided lovely feed back either as comments on my blog or on various social media platforms.

I’d like to wish those of you who celebrate Christmas a Merry Christmas and to everyone else  happy holidays, happy Yule etc. Just enjoy the time you get to spend with loved ones be they friends or family.

See you in 2019.

What are your aims with this appointment?

For a while now I have been moaning that my neck is sore / hurts / agony, take your pick. Last week I had blood tests to see if I was suffering from nutritional deficiencies and that is what was causing the numbness / pins and needles in my arms and face. Today I finally got to see a doctor. It was a long wait as with hubby’s hours it is easier if I can book an appointment on his day off, rather than have him come out of work and take me. It was actually getting the appointment to have my bloods taken that took the time to organise. It would appear Tuesday is a popular day. I then had to have the doctor’s appointment a week later. As luck would have it my neck actually wasn’t too sore today, the day I would finally see the doctor.


As this appointment was needed quickly ( although three weeks was three weeks too long really) I decided to take pot luck. I usually try to see the same doctor so there is some continuity of care and they have a basic idea of what is going on. However I was feeling very let down after my appointment in July where my neck pain was put down to stress. Now I was under a great deal of stress at the time mum had been diagnosed with cancer and there were other things going on in the background. So it would be an easy diagnosis to come to but even then I did come away from the appointment thinking I really should have been examined before this was written off as stress. It makes me worry that if I saw that doctor with chest pain that again it would be written off as stress when I could be having a heart attack. It’s not a nice situation to be in when you doubt your doctors clinical judgement. They are supposed to be the experts and be on your side, yet when you get written off as a basket case due to stress, it makes you not want to fight. Which is what I should have done because maybe I wouldn’t be in as much pain as I am now.


I will be the first to admit that yes I have been having some mental health struggles this year due to losing Willow and so many close friends and family in such a short space of time. I also went through a great deal of stress in the summer. I understand completely that mental health issues can manifest as physical issues. Yet the diagnosis of stress or anxiety or depression should only be given after an examination to check that there is nothing mechanically wrong. That didn’t happen during my appointment in July and I am angry about it. I am angry at myself for not asking the doctor why he or she felt that my symptoms of numb hands and neck pain didn’t warrant an examination. I understand that doctors especially gp’s are under enormous pressure, especially with health budgets being slashed, Don’t believe what the government tells you when it says its spending more in real terms its less money and our health service is drowning because of it. Just to make sure if this government stays in power when it suggests privatisation people will believe its the only thing to save our NHS and people like me will have no access to healthcare as we won’t be able to afford the insurance premiums. That’s my political rant over, I don’t do politics very often here but it needs said.


Anyway as usual I went off on a tangent, it makes me really angry when doctors are lazy and use a mental health diagnosis against a patient, which I feel is what happened to me in July. My notes say I am being treated for anxiety and depression, my mother has just been diagnosed with cancer so of course my physical symptoms are a manifestation of that. See how easy it is for a doctor to disregard real symptoms? The sad thing is people with anxiety and depression don’t have the energy to fight that kind of lazy doctoring. That was the position I was in then. I was happy to go along with what the doctor said because I trusted them. I am angry because they disregarded the Hippocratic oath of first do no harm. By brushing off my symptoms of stress they left me open to harm. I could have been suffering from a nutritional deficiency like B12 deficiency, a blood clot, vasculitis   a pinched nerve. However that doctor would never know as they were convinced it was stress and an increased dose of amiltriptyline would do the trick.


Today I was dreading my appointment, my mind was racing, was I going to be dismissed again as being stressed? Or would this doctor take the time to examine me?  I know doctors make mistakes and they are only human but a friend of mine almost died from meningitis after a doctor didn’t examine him. His wife found him unconscious in their home. If she hadn’t come home early from work he would have been dead. I had worked out through google and the fact that I have an ounce of common sense that the numb / pins and needles in my arms and face were being caused by a pinched nerve. Stress does not disappear when you put on a soft neck collar. Armed with this information plus the discharge notes from 2016 that contain the radiographers report from my MRI which says I have reversed cervical lordosis. I was ready to do battle and push for a diagnosis.


Why is it when you are prepared for a fight you never get one? Is it because you are giving off the don’t fuck with me vibes? I don’t know. This doctor examined me, so thoroughly that I have been in an awful lot of pain for the remainder of the day. I can’t complain about that at least this time I was taken seriously. However something they said really threw me, after they examined me they asked ” and what are your aims for this appointment?”. I have to say this really threw me, looking back now I wish I’d said ” well my aim is that I get a fucking diagnosis, after all you’re the doctor”. But I imagine that wouldn’t have gone down well and I may be looking for another healthcare provider if I had. But seriously what kind of question is that? That’s business speak and that has no place in an NHS doctors appointment. Why ask that question? Had I not had years of experience as a manager I may have found myself at a loss for words. Why do most people go to the doctors? To get help? Support? Advice? A diagnosis perhaps? Did they think I was going to say ” I want you to wave a magic wand and make my pain go away?” Did they think after years of dealing with doctors that I would have unrealistic expectations? I have Ehlers Danlos Syndrome I have learnt to expect nothing from a doctor other than a shoulder shrug at best. As you may be able to tell this question ” and what are your aims for this appointment” has really bloody annoyed me.


I was expecting at some point they were going to ask me to complete a PDP ( personal development plan) with SMART objectives Specific, Measurable, Achievable, Realistic, Targets. Or maybe they would have me complete a Root Cause Analysis so we could get to the bottom of what was triggering my neck pain. You see I did 18 years of bullshit management speak. To my shame I taught this shit to up and coming managers in a previous life. It has no place in the NHS as I am a patient not a customer, it has no place in an appointment because all I expect in an appointment is for the doctor to do their job. I have no idea what you will suggest because I am not a mind reader, I thought perhaps you might say I need an X-ray or an MRI or maybe even physio but all I wanted from you was a plan. I don’t know what your other patients want from you but from this patient to you please stop asking that question or think of something else to say. I get that some patients may come in expecting top-notch state of the art care like they see on Holby City  / Greys Anatomy/ any other popular hospital drama and your job is to manage unrealistic expectations. I don’t and that question has really annoyed me ( no shit Rach, I can hear you all saying!).


Now some of you may think that I am over reacting to this innocent question but to me it was a loaded question. I don’t doubt that this doctor had my best interests at heart, they after all discovered that I have altered sensation in my left arm and areas of complete numbness, they also have given the diagnosis of a pinched nerve in my neck. Which was the same conclusion I had come to. To me the question could be one asked by someone trying to figure out what the bare minimum is that they will get away with providing . Call me cynical but after having to do battle with numerous doctors over the years I know that cost is coming into clinical decisions more and more. It can’t be helped when the purse strings have been tightened so much that even targets for patients with cancer are being missed by the majority of NHS hospitals. If  my aim was to have my pain reduced that’s a quick win as they could give me a prescription for pain meds, if I wanted a referral to a spinal surgeon then my expectations would have to be managed and ( as I know) physio would have to be tried first. As it is I want to avoid surgery on my neck at all costs. To me the risk are just too high, that unless I am completely incapacitated by pain,  it’s not an option I want to go for. 

Having seen a spinal surgeon before I know they like you to try all options before you go for surgery and I am happy with that. Physio treatment in 2014 or 2015 meant I avoided a spinal fusion. I know that without having jumped through that hoop any referral to see a surgeon would be rejected by the hospital because all non surgical routes had not been explored. 

I have declined using the NHS physio team as unfortunately they are utterly useless when it comes to dealing with people with EDS. The last NHS physio I saw was supposed to be an expert on the condition and I could have written what she knew about EDS could have been written on the back of a postage stamp. She became totally fixated on my wheelchair, so none of the exercises were there to help the problem I was seeing her for but more to get me walking rather than using a wheelchair. I use a wheelchair due to the fact I faint without warning which leave me at a serious risk for a head injury, I also dislocate my knees, hips, ankles and spine when I walk more than a few metres. I also develop bursitis in my hips if I walk too much ( too much being more than a few metres). I had to give up walking my dogs in 2008 as I kept waking up on Woodbury common bleeding not knowing what had happened to me and the dogs wandering down the path in front of me. Thankfully the doctor I saw today was horrified at this physios dangerous fixation and agreed with me that preventing head injury and pain was imperative. Someone who was supposed to be an expert in EDS and PoTs should have known that. Hence why I am incredibly sceptical as to who gave this physio the title of an EDS expert because I have more knowledge than they do.

So I am going back to the private physio I saw in 2014 and had fantastic results with. It is incredibly expensive but I am hopeful if anyone can help me avoid spinal surgery Jane will. I hate using private instead of the NHS but I am afraid NHS appointments are too rushed. I need longer than 15 minutes, I need someone who will work with me and will admit that they know nothing about the condition rather than pretend they are an expert. It also means I wont have to travel 30 minutes to an appointment which will exhaust me before I even get there. Or the unrealistic expectation that I can go three times a week, when I don’t have a driving licence and can’t manage public transport alone as my wheelchair is attendant pushed how am I supposed to get there? Because I am a paying customer there I am  treated in a much better way and they understand that there us a life outside of the health service something which some NHS staff struggle to understand. I am incredibly lucky that I am in the position where currently I can afford to pay for private treatment but it will still put a strain on my finances.

So I wonder what will be the next go to question at any future gp’s appointment? As long as it isn’t “and what do you want me to do about it?” I think I’ll cope!

Insomnia

I have written about my struggles with insomnia previously, thankfully though its not been something I have struggled with since around 2016 when I was prescribed melatonin and the antidepressant Mirtazapine . Both have improved my sleeping habits immensely. I also take a low dose of amiltriptyline to prevent migraines and again this helps me sleep….until last Sunday night (18th November).

Sunday nights have been a sleeping issue for me as long as I can remember. I think the sleeping problems started over the anxiety of going back to school on the Monday. Throughout my school years I was bullied, so going to school was a cause of anxiety. If ever anyone says to me their school days were the best of their lives I want to punch them in the face. For me they were a source of misery and I never knew who would be gunning for me next. Primary school was particularly awful, comprehensive school was slightly better but I just felt so out of place there having come from a tiny school of less than 400 pupils to then be amongst over 800.

After school I then had the Monday morning work anxiety. I would be ok on Sunday until about 5pm and then I would begin to worry about events that would take place at work during the week. Again I was the target of two bullies unfortunately both were my boss and when one left the business the other one jumped right in and took their place. I loved my job and was good at it but it did absolutely nothing for my mental health.

So now after years of Sunday night anxiety its ingrained in me and I can never sleep or settle down for sleep very easily on a Sunday evening. So when it happened this Sunday I just shrugged my shoulder and thought oh well I’ll sleep Monday. Yet when Monday came around the same thing happened no sleep. I put Mondays lack of sleep down to having bloods being done on Tuesday morning. Its always a drama getting blood out of me. It was it took 2 people three attempts. I’ve got a lovely blown vein on the back of my hand. 

Tuesday was also dramatic as our washing machine broke down, well died to be more accurate. It was about 5 years old and had been a really good machine – washing machines don’t seem to last very long in this house. Probably due to the dogs stuff that fills the waste pipe with sand. I have a Rug bag  which is what horse owners put their horses rugs in to stop all the dirt etc going into the machine – its a bit like a lingerie bag for horses lol! A new machine was ordered and set up for delivery the following day. We can’t be without a machine when we have two elderly dogs who have accidents.

So when I lay tossing and turning last night I presumed I was anxious about the new machine being delivered. I wasn’t remotely anxious I just couldn’t drop off to sleep and if I did drop off I was only staying asleep for ten minutes or so. Today I am exhausted three nights of very little sleep has destroyed me after being used to sleeping again. On all three nights out of desperation I have increased my melatonin, added in an extra amiltriptyline and then last night I toyed with taking my last diazepam which is my emergency pill for either the dentist or when my neck pain is off the charts. I don’t have the doctors until next week  and I will ask about an additional prescription of diazepam as when the neck pain is bad its the only thing that relives it.

Last night well technically this morning I didnt drop off until gone 02.30am , at 7am I received a text message to tell me that our new washing machine would be with us in 20 minutes. So bang went any chance of managing to sleep for a bit longer. Jay has gone back to bed. He can fall asleep pretty much whenever and wherever he wants. I am unable to do that and I am always terrified if I sleep during the day I wont sleep at night. So today I will push through until I can’t go on any longer. My plans of using my embroidery machine have gone out of the window. I am so out of it I’d be a danger to myself holding a pencil let alone using machinery. If I didn’t have a load of things being delivered today I would have crawled back into bed right now, regardless of not being able to sleep tonight.

Insomnia causes my pain levels to increase, my mood to plummet and makes me thoroughly miserable. I hate not sleeping because the knock on effects can last weeks. Its been so long since I have had a run of three nights that I had forgotten how bloody awful insomnia makes me feel. 

Fingers crossed that at some point this week I fall asleep before 2.30am!

The storm has passed

The last 4 months have been a particularly trying time for me. Obviously some stuff I have alluded to such as my mum being diagnosed with cancer however there have been other things going on as well, which for reasons of my own privacy I won’t be sharing. I do try to share as much as possible with my readers but sometimes you have to hold a little of yourself back. When I write I always think do I care if my worst enemy has this information? If the answer is no then it gets written about, if yes well it never makes it to the blog.

I do like to have a division between my world and my life in cyber space. Like all people do in real life we have the public face the person we choose to present to the outside world and the private face, the person who only the very closest people to you get to see.

Thankfully what has been going on behind the scenes has now resolved and life can move forward again. Its feels like a massive weight has been lifted. For those 4 months I didn’t feel like me at all but someone who had a huge black cloud hanging over them constantly. I really didn’t feel like I was living and enjoying life merely  surviving. The anxiety the situation induced was off the chart. I found that the only place I felt any happiness was sat at my sewing machine, purely because you can’t ruminate ( well I can’t) and sew. My attention has to kept solely on the job in hand. When my mind wandered so did my stitches! Sewing yet again has got me through a very difficult period in my life. It is just such a shame that as I mentioned in last week’s post sewing is at times getting painful, causing me pain in my neck, back and causing pins and needles in my hands, arms and face. I now have to restrict the amount of time I spend sewing. I have found wearing a soft collar prolongs the time I can spend sewing.

Since July I have been sewing like a woman possessed! I decided earlier on in the year after my success in selling Star Christmas Tree toppers in the run up to last Christmas, this year I would experiment with opening up a little “shop” in cyber space. I’m not on Etsy – at the moment I couldn’t handle the stress that would involve! I have set up a little Christmas shop on a social media platform where my customers are by invitation only. As this is an experiment to see what sells and what doesn’t I have limited the numbers. It’s also filled with people who know me, who know that my health is very up and down and who wouldn’t hold it against me if I was slow to respond to a query etc. If I set up an Etsy shop I wouldn’t have customers who knew me and could be put under a great deal of pressure by their demands.

It has really given my self-confidence a boost. To this day I am amazed that people want to but the things that I make. Not that I think my items are crap – my heart and soul goes into them and I am my own harshest critic. I just can’t believe in 13 months how far I have come. I still have days where my self-esteem has a wobble but that’s life and I can deal with that. Living under a black cloud for 4 months is not something I want to repeat in a hurry. I didn’t feel like me at all, I didn’t act like me at all and I can’t have been a bundle of laughs to be around if I am perfectly honest. Its amazing what a difference a week can make and I feel like I am me again.

I’ve been making all sorts of things for my cyber shop since the end of June beginning of July,

 Christmas bunting / garlands

Christmas Tree toppers

Christmas stockings

Soft toys

Travis bags in various designs

 Lavender Ravioli

Norwegian Santa’s / Christmas Gnomes

Christmas tree decorations

Christmas door wreaths

 

I am still making a few more bits and pieces and will do throughout November. Then at some point I need to bind two lap quilts I made for our sofas, make Mr Myasthenia Kids fabric advent calendar. Plus make family and friends Christmas presents.

And as if that wasn’t enough I treated myself to an embroidery machine, which I am calling the beast V2 as my Atelier 5 (janome) is called the beast. I can’t wait to start learning how my new machine works. I bought a Brother Innovis 800e which is a mid range stand alone embroidery machine. It has a lovely big hoop which means I can work on several sizes of design. Jamie has already put in a request that he gets some new handkerchiefs that have been monogrammed by me! It has so many inbuilt designs and you can buy more designs on-line or can get them for free.

 

 

 

 

However buying the embroidery machine also meant upgrading my Chromebook. My old Chromebook couldn’t transfer data onto a USB stick nor download information from it. I tried resurrecting my old laptop – which ran on windows 7 ( so it was basically an antique) but it was painfully slow and I find windows as an operating system, a pile of shite and illogical, especially when you have been using Chromebooks and chrome ever since they were on sale in the UK.  I spent a small fortune on the Chromebook its an Asus Flip, so you can turn the keyboard behind the screen and it works like a tablet. It is amazing how the technology has advanced over the years.

New Chromebooks can transfer data to and from USB sticks, all I needed was a USB hub as the Chromebook comes with a micro USB port. I picked up a reasonably priced one from the place that has the same name as the South American River and within seconds was transferring data between USB sticks like a pro. It is something I have never done before, there was nothing to learn, no drivers to install the screen simply tells you a new device has been located and do you want to open it. I felt like the king or should I say queen of the world teaching myself how to do this in seconds. With me and windows stuff never took seconds it could take months or even years for me to learn the most basic of tasks as it just never felt logical to me. I often felt like I was being expected to juggle and balance a plate on the end of my nose!

So although my new Embroidery machine arrived yesterday ( Monday ) I didn’t have a play on it. By the time it arrived it was close to 3pm and my back had given out completely. I must have been a sorry sight as the delivery guy brought it into the house for me. Thank you DPD! It stayed in the box another hour whilst I waited for the back pain to subside and to stop the feeling that my ribs were being crushed. I then very slowly unpacked it and set it up in my sewing room come kitchen / breakfast room. I am hoping later on today will be when I get to have my first go on it.

And hubby and I had lovely birthdays last week. Happy birthday dad xxx