A Call to Arms

I very rarely ask for a call to arms but I am asking today. If you do one thing today then please tweet @AnnJamesNHS , @Derriford_Hosp , @BBCSpotlight, @itvwestcountry. Why? Well in its infinite wisdom Derriford Hospital that treats the majority of PoTS sufferers and Autonomic nervous system disorders in Devon and Cornwall ( and some even further a field) has decided to cease funding the PoTS clinic and retire an outstanding Doctor called Dr Jamie Fulton.

There is a board meeting at the hospital on Friday 27th March and you can submit a question to   @Rich_Crompton via twitter by 12pm today.

Dr Jamie Fulton is amazing and is loved by all his patients. He cares, he listens, he spends time with you and you never feel rushed out the door. He thinks of of out of the box treatments for his patients. Without his help I wouldn't have the treatment regime that I am on now. I am not better but life is liveable. I am not constantly fainting without warning, my blood pressure is higher than 70/40.

Dr Fulton has changed people's lives due to his clinic. People that for years have been told that their condition is all in their head or that they have FII - fictitious induced illness / Somatisation disorder. He treats the whole patient rather than just the symptoms.

Without him I wouldn't have had my aorta scanned, something that is supposed to be done every 3 years ( due to me having EDS)  yet in my neck of the wood no one ever bothered to do it despite my repeated requests. He tried all the medications he could to help me and never once gave up when I reacted badly to Midodrine and Ivabradine. I now take pyridostigmine and sudafed ( also known as pseudoephedrine ). It is these two drugs along with salt tablets that have made the biggest difference to me. Yes I am not better or fully functioning but I am better than I was and that is huge to me.

The reasoning behind the closing of the clinic is saving money, under the guise of letting gp's (who are already shockingly overworked and in short supply) manage long term health conditions. The problem is many of us with PoTS won't get better with simple lifestyle changes of upping fluids and salt. If that's all that was needed PoTS clinics wouldn't exist. Many of us need medications that in the UK have to be prescribed initially by a hospital consultant. They then get prescribed by the gp ( primary care ) but on the understanding both the consultant and the gp share the risk if something was to go wrong. Many gp's without a consultants input will just refuse to prescribe treatment. With no PoTS consultant for the majority of Devon and Cornwall  some of these patients whose PoTS has been well controlled for years will suddenly find their gp practices will no longer prescribe the medications that have kept them functioning.

There is no PoTS clinic at my local hospital as the doctor that ran it retired last year and no one wants to take this area on. As one doctor told me "No one in their right mind would apply for a devalued, unsupported post as a means of sacrificing their career and ambition"  They also let me know that the trust that they worked for had "systematically, eroded the hospitals general medicine and autonomic clinic for quite sometime. They had no forward plan, no succession planning for personnel in place" they were basically letting it die a death banking on the fact the PoTS patients and others that it serves would let it go quietly as we would be too sick to fight.

Well Ann James I am here to tell you that you have vastly underestimated the amount of noise we are going to make. It wont be one or two tweets but enough to ensure that we are heard. Enough to show what a stupidly short sighted decision you have made when so many people who have had Covid go on to develop long Covid and you will not have the services or the expertise to be able to help these people. Shame on you!

So if you can help by tweeting, writing to Ann James at Derriford hospital, contacting the press, writing to your MP then please do it. One Voice isn't enough we need lots of loud voices that are refusing to go away until this ridiculous decision is reversed.

You can find out who your MP is here

https://members.parliament.uk/FindYourMP

Please share this blog post far and wide and get our voices heard!

Back pain update

The back pain I had last week was awful. I would wake up thinking I was ok and then within minutes know I was in for another day of unrelenting pain. No position was comfortable. lying hurt, walking hurt, sitting hurt . I had to stop what I was doing and just spend time alternating between resting and keeping mobile so my back didn't get worse by seizing up.  I hate it when my back pain gets that bad because either I am in too much pain to be able to concentrate on anything or I physically can't manage to do the things that bring me joy, like my sewing, embroidery and now crochet. It also means projects that I had planned had to be paused. 

I really don't like pausing projects as the slightest thing will stress me out these days. I am very easy to stress out when it comes to be crafting. Usually my crafting projects are presents. I like to have them made well ahead of schedule, by not being able to do anything means the deadlines are racing towards me. That then makes me stressed and tense, which isn't great when your back is bad. 

So without typing it or saying it out loud as I have known from previous experiences this tends to jinx me, lets just say things are much better. I am being careful, not twisting in only an EDS body can contort, moving more slowly and just being aware of staying in one position for too long. Last week seemed to whizz by in a drug induced haze, this week I feel present and able to do what I want to do. 

Unfortunately due to pain I can't stand in one spot for longer than about 30 seconds without the pain in my back becoming unbearable. The only way I can describe it is if my back is collapsing down on itself. The pain is right at the base of my spine. Years ago when standing wasn't a problem due to PoTS, I would have to hop from foot to foot as standing in one place would trigger back pain. I am working on my core muscles again now that the pain has settled. For crafting we have what we term the "camping table" even though we don't go camping, if I need extra space then that table is brought out and it means I can sit comfortably and get any jobs that would normally require me to stand done safely sat down.

I am still limited presently with the amount of time I can spend doing things as due to the car accident back in August, I am left with crippling neck pain and headaches, whenever I am working with my head tilted down. It is the same with computer screens, mobile (cell) phones, books, magazine and working on my crochet. Anything that has my head tilted down has to be carefully managed so that I don't cripple myself with pain later. This has been the most frustrating thing since the accident as I had managed to massively improve the amount of time I could work at my crafting ( embroidery / sewing / crochet) without causing myself pain.Now I am back to the bad old days of 15 minute bursts and having to ensure I stretch my shoulders and neck and move away from what I am doing. 

I am not receiving any treatment for the injury I sustained, I got told just after Christmas that my MRI scan was clear so orthopaedics don't have any suggestions other than it will take up to two years for the situation to get better. In the meantime I still have a left arm that has pins and needles in it every day and a massive flare up of occipital neuralgia that I haven't had since 2016 and I thought was behind me.

It is very easy to slip down the rabbit hole and get depressed about it all. I love sewing, embroidery and crochet. They are my creative outlet, they are the things that make me feel alive. From 2008 until 2017 I barely existed, suddenly when I found sewing I felt alive. I was incredibly lucky that when my Gran passed away I was left a small inheritance which allowed me to buy the things I wanted to be able to lean how to sew, make quilts, machine embroidery etc. Now with sustaining the injury in the car crash it can sometimes feel like all those things are slipping away from me. 

The Covid situation certainly hasn't helped things, I have had to contact my doctors so many times over the last 12 months about various issues that I haven't been able to manage myself. I have also managed to develop psoriasis ( well I think I have actually had it years it has just got much worse this year) my immune system is taking a battering. The last month or so I have had a really angry bit of skin just below my bottom lip on the right side. I presumed it was eczema, I get that when stressed. For the last month I have been treating it, last week I decided to try a different direction and ordered some cold sore cream. Let me just state here and now, it didn't tingle, hurt, blister etc etc however after 48 hours of religiously applying the cream it has almost gone. Whatever the hell it was, it certainly didn't resemble a cold sore has almost disappeared. It was about 2cm long and 1cm wide. So not small and very noticeable, I have been very grateful for the fact we are still wearing masks in public places! 

Whilst I am off in tangent land I will let you know that my blood tests have come back all ok so I have now been referred to Neurology- you know my favourite department for my possible focal dystonia. They were trying to tell me it was the mestinon causing my foot problems and then it was an electrolyte imbalance. I got sent a small novel by the local hospital. It was quite ridiculous as basically the letter tells me that they will either a) send my gp a treatment plan to follow or b) they will see me for either an appointment or tests or both. I then received a small woodlands worth of paper all about Covid, wearing a mask in hospital etc. Which is bloody wasteful and totally inappropriate for the letter I received. I also got travel directions - for a letter that just says they are assessing my referral. Now they look after a large region, how much money, paper and time have they wasted by sending out these small forests to people who it doesn't actually apply to? Ok rant over.

Good news though that my CA125 is obviously ok, I was told any issues they would contact me. Plus the fact that I have the letter from the hospital saying that they are looking at my referral meant there wasn't an easy fix for the gp. 

So for the moment back wise ( and we are talking the whole of my spine ) I am being very careful not to upset it and end up back where I was last week, where I was close to tears on numerous occasions.

Bad pain day

 I hate it when I wake up and within seconds of opening my eyes, I am already registering the pain I am in. God knows what gymnastics I got up to in my sleep last night but my back is letting me know it really isn't impressed. It has been quite some time since my lower back has complained quite so loudly, every step, every movement is met with a counter move of pain coming from the right side of my spine. Again this is unusual as it is normally the left side of my back that gives me the problems. 

Had I been displaying any of the red flag symptoms I of course would have got medical attention. Red flag symptoms with back pain are loss of control of the bladder and bowel, I have had these drilled into me for years by my doctors, purely because I have presented with back pain so many times before. So whilst I don't have any of these issues I am keeping a watchful eye on my symptoms with it being a different side of my back that the pain is originating from.

Initially I tried to just soldier on believing if I moved around, stretched and went about my day that the pain would lessen. Nine times out of ten getting moving helps.  It didn't, I even did an exercise session on my bike to see if that would ease things up. Whilst it didn't hurt to move my legs, after a time my spine got so painful that just having the exercise bikes seat pressing on my spine was enough to make me jump. No positions was comfortable, so the next thing was to try was a lobster hot shower. No relief was provided with that either. 

Contrary to popular belief I don't run to the pain relief as soon as I have the slightest twinge, this morning I really wish I had as perhaps then I wouldn't have had to put up with hours of pain that felt like I was being stabbed ( just above my right buttock, about an inch away from my spine) with a hot knife with every movement. I hate having to take more than my allotted amount of pain relief, mainly because I find it makes me really tired ( but so does pain) and it impacts on what I can then do that day because I am not fully with it.

If my back wasn't quite so sensitive to touch I would have tried my Tens machine but anything touching my back on that right side is causing pain. I do get very sore over the vertebrae at the base of my spine, when the pain is like this it is best to avoid having anything touching it if at all possible.

 As soon as I felt the pain in my back today I knew all my plans for the day had just gone up in smoke. I find that deeply frustrating, making plans at the best of times is always a bit hit and miss as I never know from hour to hour how I am going to feel. I wanted to do some sewing today but I know that this would make my back worse because being sat in one position and not moving around would have put more pressure on my spine. So I have a pile of fabric cut out ready to be quilted to make humbug bags a gift I got from my secret Santa in 2019 and haven't had the time to make until now. So they will have to wait for a bit longer.

After my shower I took additional pain relief, the hot water hadn't been enough to provide any relief. This feels like my spondylolithesis  has shifted, it does this every so often, I may have quite severe pain for a day, days or even weeks and then it settles again. ( For more info on this condition ) My Spondylolithesis is at the level of L5 / S1 so at the base of my spine and I have had issues with this for years. You can see a diagram of the vertebrae and their names by clicking here. 

It would be great if taking extra pain relief didn't then cause problems of it's own, the pain is better managed but at what cost? I find pain particularly bad pain exhausting, like most people. However it is a double whammy of fatigue when I take extra pain relief, as I find that wipes me out as well. I can also end up with really itchy skin when I have to increase the amount of morphine I have had to take to cope with the level of pain I am in. I have to attempt to ignore the itchy sensations on my skin because once I start scratching I will not stop and it wont provide any relief. I will scratch until I draw blood. So it is never a case of popping a pill and everything is made better. 

There is the added complication of increasing pain relief that it messes with your ability to make decisions, work safely and concentrate. A blog post that would have normally taken an hour or so has taken close to three (and I am still nowhere near finished, despite it feeling like I have written 30'000 words). This also limits what I can actually do to while away the hours whilst my husband is out at work. TV shows I may normally watch are a no go because I will have no idea at all at the end of an episode what happened and it will leave a gaping hole in the story line for me. I have been known to watch episodes again when the pain relief has been dropped back to normal levels, and when I do it is like I never watched the episode in the first place because I remember so little of it.

I am pretty confident that whatever has shifted overnight in my spine to cause me issues today will more than likely shift back overnight and I will wake up with the pain having gone. People find that hard to believe, I have to be honest even I scratch my head with it at times. However with the connective tissue disorder EDS, things do move around far more than they should. Which can be met with incredulity by both medical professionals and friends. Many don't understand how you can be in severe pain one day and then wake up the next day with the pain gone. It flummoxes me regularly, sometimes it doesn't go away overnight and may stay for a few days. 

So fingers crossed this back pain leaves as suddenly as it arrived so the bad pain days are limited.

Covid Vaccine - my experience

Last Friday I was lucky enough to receive the Covid vaccine, the vaccine I received was the Oxford AstraZeneca one. I was alerted by text message the previous week to let me know that I could book my appointment to receive the vaccination, as I was in group 6. Which is the current group that is being vaccinated in our town. We are incredibly lucky that the hub for our part of the county is in my small town. I feel sorry for those who live further afield. But for once living where I do has a benefit.

Mr Myasthenia was also messaged to say he could book in as he is also in group six and my unpaid carer. He booked in for 9am and I booked in for midday so that Dembe our Labrador wasn't left. We were excited and nervous at the same time. I had read quite a few posts on line with people being quite poorly after the vaccination. You get the same when it is flu jab season so I do tend to take these with a pinch of salt. Just because someone else has a reaction doesn't mean you will.

At around 9.10am on the Friday morning, Mr Myasthenia Kid messaged me to say he had his jab. That the process at the hub was like a well oiled military machine and that he had just finished waiting the required 10 minutes after his vaccination. He had the Pfizer one he told me proudly. The same one that his mum had the week before Christmas. He let me know that he was fine and that he hadn't even felt the injection go in. Which for him is a huge deal, as he is a little scared of needles. Having to have gas and air for his travel vaccinations before we got married in 2000. He said he would come and get me for mine a bit later and not to worry, he didn't have a headache or any of the other known side effects.

Mr Myasthenia Kid arrived just after 11.35 to take me to the hub to get my jab. He talked me through the process. I suffer with social anxiety so new situations can cause me to panic a bit. I am usually really good at covering this stuff up and most people who know me wouldn't believe me if I told them I suffered from social anxiety. My social anxiety has increased during lock down due to not seeing anyone on a regular basis. I would have to navigate the vaccination hub alone, without my security blankets of Dembe and Mr MG Kid. 

I remembered my face mask - I don't go out other than when Jay takes Dembe out and I sit in the car, so I don't have to wear a mask very often. I put that on as soon as I arrived in the car park. I was very grateful for my run down of how everything is done at the hub as I didn't feel so anxious. There was a hand sanitiser station on entering the building. I booked in at the reception area and joined the queue. The lady at reception gave me a leaflet for the Pfizer vaccine but explained supplies were running low and I may be given the AstraZeneca one, in which case they would provide me with a leaflet for that.

My only complaint about the queue was that although the marks on the floor were spaced at every 2 metres they didn't have chairs at every 2 metre gap. Which if you are crap at standing, many people with a wide variety of complaints are wasn't very well thought out. The queue moved incredibly quickly. I would say that there were at least 20 people ahead of me and I was at the front of the queue in less than 10 minutes.

Once at the front of the queue you had to wait until one of around 10 booths were empty. Inside each booth was a member of staff booking you onto their computer and the person who was injecting you. I had remembered to print off my list of allergies from my computer which I try to keep updated. I like to try and carry a copy of this list in my handbag or coat pocket when I go out in case I am ever involved in an accident. My dad had been quizzed about his allergies two weeks prior to my appointment. when he went for his vaccination so I knew this was incredibly important. 

Mr MG Kid told me that they had issues locating him on the computer when he was getting his jab. Low and behold they had the same issue with me. It was funny as the girl that was imputing the information onto the computer was someone I hadn't see nor spoken to since probably around 2010. So it was hilarious when she said "is that Rachel?" and I said "Rachel?" as that is her name too. So she knew all my details to put into the computer but it was a situation where it was saying no! Rachel then asked me if I had anything with my NHS number on. Luckily I did, my list of allergies contains my hospital number and my NHS number. Rachel popped this on the computer and as if by magic my details appeared... exactly the same as she had typed them onto the screen a moment earlier.

Due to my list of allergies, the person that was doing the injection had to go and speak to the doctor in charge. She wanted to ensure that there was nothing contained within the vaccine that I could have a reaction with. When she came back she said that when my medical records had been reviewed by my gp practice they has put me down as needing the Oxford AstraZeneca one due to the allergies I have to a long list of medications. They double checked that I didn't carry an epi pen or had an allergic reaction to a vaccination previously. Then without me even feeling it I had my vaccination. Due to the fact I am have allergies I was asked to sit and wait for ten minutes in the area they have near the exit. Normally with the Oxford AstraZenica one you can leave straight away. With the Pfizer one everyone has to wait 10 minutes.

I sat in the waiting area and within a few minutes I started to feel hot, weird and I had a funny feeling in my chest. I started to get tunnel vision. So I asked someone for help. I was lead to booth 11 which had a bed on it. I lay down and my face felt like it was burning. As soon as I was flat on my back I started to feel a lot better. I think I simply had a panic attack. The combination of having a nasty allergic reaction previously, being hot, wearing a face mask and being anxious, was too much and I panicked pure and simple. I lay down for around 5 minutes. As soon as I felt ok I sat up, then waited to ensure I was ok  sitting up and then made my way to the exit. Dying of embarrassment for being that person, who is probably being accused of being a drama queen.

Friday afternoon a few hours after the vaccine I started to feel very tired and had the chills. As we have a digital thermometer in the house I checked my temperature regularly as I know some people have spiked a fever after the vaccination. My temperature remained normal, throughout the next few days. I would say I felt under the weather but was quite relieved that I didn't have the headache a lot of my friends had said that they got within hours of having it.

At 1am Saturday morning I woke up racked with pain, all my muscles were burning, when I got out of bed to go to the toilet I was freezing cold. I felt like I was coming down with the flu. I took some paracetamol and went back to sleep. My left arm where I had the jab was very sore, the whole muscle ached. All day I felt pretty out of it, horrendously tired, muscles aching as the day went on the pain got worse. By 17.30 I went back to bed, I took regular paracetamol and drank loads. Resting and staying in bed was the only way to go so I got a new tv series to watch and lay in bed with that on.

When I woke up on Sunday initially I felt a lot better than I had on Saturday morning. This was temporary though. After a shower and dressing I was wiped out. The muscle pain had reduced and was now just uncomfortable. However on moving around more than a step or two I was shaking quite violently. I was struggling to concentrate and just felt really awful. At 3pm I gave up trying to remain out of bed and crawled back in.

What I also noticed on Sunday was that my glands in my neck, groin, armpits and stomach had swollen up. I had glandular fever when I was 21, many years ago now and since then whenever I am poorly with a flu like illness I end up with my glands swelling up. They get quite painful, they ache and no pain relief helps. The glands in my neck were up so badly that they were giving me earache. I tried to see the bright side and that my immune system was doing its job. Having chatted to some other younger friends I had been quite lucky. Some of them who also had the jab on Friday still hadn't been able to get out of bed for anything other than the toilet. 

The weird thing was whenever I was lying down and doing nothing I actually felt ok. However attempting to get up and do stuff made me feel awful. So they only thing I could do was just lie around in bed and hope that tomorrow it would be better. 

Sunday into Monday I slept 12 hours, which for me is a ridiculous amount. I usually get by on 7-8 hours. I spent years managing on much less so I am happy to get more sleep these days. I felt ok on waking but didn't say it out loud as I was terrified the minute I did anything I would be feeling awful again. I have to say thank goodness the side effects have gone. I am feeling so much better now. The glands in my armpits are sore but all the other glands have gone back down. My left arm is just sore at the site of the injection and only hurts if pressure is applied to it . I am at long last out the other side of it. I am not exactly thrilled that I will probably end up going through this again in 12 weeks but hey, my odds with contracting Covid weren't good and I wasn't prepared to just take my chances with it.

My Myasthenia Kid who had the Pfizer vaccine, had really bad fatigue on Friday. He felt really drained and his arm was very sore. Saturday morning he still felt quite fatigued and his legs were aching. However this wasn't enough for him not to go into work. By Saturday evening he was through the other side of it and the only issue he had was a sore arm at the injection site and nothing more. When he had the flu jab with me in November all he had was a sore arm where as I was poorly for a few days.

I would still have the vaccine even with knowing this. It is short term discomfort and feeling rough, to be protected. I know those who are anti - vaccine won't agree and that's fine, that's your prerogative.