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.

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.

If you have a problem all you do is email Dr Fulton and he answers you. He was instrumental in getting me caffeine infusions in 2016 when I had a spontaneous spinal fluid leak.

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 herehttps://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.