Dysautonomia

Campaign update – Success

/ RachelMorrisMcGeethemyastheniakid / Leave a comment

As I wrote last week’s blog Success, I was aware of another success that I had obtained which was keeping the General Medicine and Autonomic Clinic at Derriford Hospital Plymouth open for at least another year and managing to keep Dr Fulton on n his position to run it. Obviously the success is not mine alone, many people were necessary to get us to this place, the members of the campaign group who were willing for their stories to be shared in print and on the television. Members writing to their MP’s ( members of Parliament ) to force action, plus a widespread email campaign to many people involved in all aspects of healthcare.

As part of the campaign one member managed to get Baroness Blackwood to raise a question in The House of Lords ( Parliaments upper chamber ). The Baroness also suffer’s from EDS and PoTS so knows how important it is for sufferers to have access to proper healthcare and the provision of clinics in the UK is woefully inadequate especially in the devolved nations, Wales, Scotland and Northern Ireland. This was an incredible achievement in itself to raise the campaign profile and get it mentioned for prosperity in Hansard ( the document that records all questions and answers in both houses).

We had some excellent coverage in Plymouths newspaper and their online presence. We had two journalists join the group, whilst the BBC’s coverage was poor with incorrect figures being presented as fact, they claimed a mere 200 patients would be without care when the actual figure for those in Derrifords catchment area was 1000-1500 and that was without all those who were dropped from Dr Fulton’s list in June 2020 who were not in the hospitals catchment area and have been left without a consultant. You can read  first article here. The second article when we knew the clinic had been saved for at least 12 months and Dr Fulton is taking a much needed break of two months, can be read here. The journalist Molly has been incredibly supportive of our campaign and has produced two excellent pieces that have held Derriford Hospital to account. Thank you to Rebecca for sharing her story and explaining why Dr Fulton is so important.

I am amazed that we have achieved all we have in the short space of time since the 26th March when I asked the question at the hospital trusts board meeting, to starting the group and producing a letter to be sent out to various different groups and people to publicise our campaign. Thanks to Carol who managed to wrangle my 6 page goodness knows how many words into a succinct 3 page punchy letter that was hard to ignore. It is a real shame despite contacting my own MP by post, by recorded delivery and by multiple emails he failed to respond or provide any help at all to our campaign. Yet there were Plymouth and surrounding area MP’s who were more than happy to roll up their sleeves and fight for their constituents and this wasn’t just based on political parties, we got cross party support. Which shows how effective a campaign can be if you can get people in power interested in it.

Sadly I am aware that as Dr Fulton is on a fixed term contract and this next year marks one commissioning cycle we may still very well be in the same position next year especially if long Covid sufferers have been forgotten. People with Long Covid seem to develop Dysautonomia more specifically PoTS. Having that to use as part of the campaign made it very relevant to the media and it also gave us the advantage with Derriford as closing the clinic would in effect mean they were withdrawing care from an emerging patient group.

The group will be staying on Facebook as long as it is needed, plus now it has turned into quite an effective local group for PoTS patients, which is another thing to be proud of.

At the moment I am still left without a hospital consultant, there is no one based at the largest hospital near me and Dr Fulton was my consultant until June 2020. He is hopeful that he will be able to treat patients who are out of area at some point in the future and I am keeping everything crossed for that. The main aim of the campaign has been achieved for the moment.

I can’t lie it has been pretty exhausting organising a campaign in the midst of a significant bereavement for my husband and his family. There have been days when it has felt like my world was imploding, where I was so exhausted that I couldn’t continue and then I would get a message out of the blue from a member of the campaign group thanking me for everything I had done and that gave me the strength to continue. I am happy we have got as far as we have in the space of a few months and that I now don’t have to be continually thinking about our next move as a campaign.

Back Pain Sucks

/ RachelMorrisMcGeethemyastheniakid / Leave a comment

For a very long time I have had problems with my back. They first came to the fore when I was 16 and I started work. The job was physically demanding with lots of bending and lifting heavy items (I worked in retail). It wasn’t long until I started suffering from herniated discs and spending a lot of time at various chiropractor’s. I wasn’t diagnosed with Ehlers Danlos Syndrome (EDS) until I was 37, perhaps if I had received the diagnosis earlier I would have been better able to protect my back.

 

When I first raised the possibility of EDS being the condition that was at the heart of all my joint problems and autonomic nervous system dysfunction I was basically laughed out of the doctor’s office. I was told EDS was so rare that if I had it, I would have been diagnosed in early childhood (this from the same doctors practice that told me the pains in my legs that kept me awake at night were growing pains and I was 26!). The fact that my pulse raised by over 30bpm (and could actually double from 80bpm to 160bpm within seconds of standing) I was told was normal for your pulse to raise on standing.Which let’s be honest is factually correct, it’s just a normal person’s heart rate will rise 15-20bpm on standing and then go back to normal within a few seconds and mine didn’t do that.  I left that doctor’s surgery a few months later and joined another practice, where I would get the support to finally end the mystery of the lifelong pain I had suffered.

 

When I did finally get the diagnosis in May 2011, I was told my spine was the most hypermobile joint of my body. It made sense as out of all the joints in my body my back was causing me the major problems. Whilst working (I left in 2008 medically retired) I found I could not stand in one place for our twice daily meetings without the pain starting immediately. I would be shuffling from foot to foot, finding something to lean up against or on other occasions finding somewhere to sit down. Standing still was agony and it’s very difficult to explain to people that you can’t stand still, when we do it all the time. At this time I was walking our three dogs for over 20 miles each week, walking could be painful when my back was exceptionally bad but I could push through that, the pain was so intense on standing still I would do anything I could to avoid it.

 

Moving is important when you have EDS, if I do not move, change positions every 15 minutes or so my body can become locked in that position. Even a short car journey can leave me being unable to stand up straight. Spending a prolonged amount of time in my wheelchair can leave me being unable to stand or struggle to transfer myself into the car. Last year I spent an awful lot of my time lying down due to the CSF Leak (which by the way touch wood, touch lots of it, looks like it has sealed itself), whilst the lying down relieved the awful headache that accompanied the leak it has destroyed my muscle strength in the rest of my body, particularly my back.

 

For the first time in 12 months I can be upright but due to prolonged bed rest I can’t do the things I want to. My legs shake when I try to stand, my back causes me immense pain when standing. The only way I can explain the feeling is that it feels like I have a lead weight placed on the top of my head and it is crushing my spinal column all the way down to my tail bone. Even walking is painful, I no longer feel like I am walking upright but as if my pelvis may collapse under me along with the bottom half of my spine. My left foot is back to being numb along with parts of my left leg. I haven’t been in this kind of mess with my back since 2014. Then I started to do Pilates to increase my core strength, it worked really well and I dodged the bullet of needing a spinal fusion. I have arthritis in my spine and a flattened disc. It was important to me that I didn’t have the surgery yet because with surgery comes a whole load of other risks.

 

I know I should start doing Pilates again but I am scared. Performing Pilates in 2016 is what “caused” the leak. Well EDS causing weak collagen caused the dura around my spinal cord to tear but I was doing Pilates when it happened. Do I want to exchange the back pain for the return of the head pain and the answer at the moment is no. A few more nights of disturbed sleep will probably change my mind. I wake up in severe pain every morning, due to not moving much whilst I am asleep. My spine seizes up and it becomes very difficult to move. Quite often when I wake my back is in spasm, so I lie there like a turtle stuck on its back until the spasm recedes and I am able to move again. My core strength has gone completely and this is putting more pressure on my spine. It’s a mess, a painful hot mess.

It seems a very cruel twist of fate that whilst my head pain has gone now that I have self healed my leak, that I am now left with pain in another part of my body. No position is comfortable now, sitting, lying or standing it all hurts. I am back to spending life with a hot water bottle tucked down the back of my trousers or like at the moment sat on my heated throw, temperature set to sear!

 

As always I am trying to push through it, increase my muscle strength so that I can get back to somewhere near my level of normal again. There is no stopping due to pain as there is no comfort in it. My painkillers aren’t touching it, like most people with EDS I soldier on enduring levels of pain that would have others curling up in a ball crying.
Back pain sucks, it really, really sucks.