Campaign

How has another week passed by already? It’s crazy how quickly the weeks are going by.

On the 25th March I wrote https://themyastheniakid.com/2021/03/25/a-call-to-arms/ A call to arms,

never in my wildest dreams would I have believed that I am now spearheading a campaign to save the General Medicine / Autonomic Clinic at Derriford Hospital. What started off as a small group on Facebook now has over 200 members, the campaign has been featured on the local BBC news programme and also in the main Plymouth news paper. My thanks go out to those members who were good enough to speak to the journalists and put across their stories of how the clinic has helped them and how detrimental to their health it would be should it close.

Despite telling me on 26th March when my question was put to the Board of Trustee’s at the hospital that an announcement would be forthcoming mid April we are now mid May and we still have had no announcement from the hospital as to what it’s plans are. I have this week sent another email to the hospital asking for an update as over 1000 patients are worrying about the future of their care.

On 13th April I sent off around 30 plus emails to lots of different organisations and people who might be able to help. I even contacted the Health Secretary Matt Hancock and I am still yet to get a reply. My own MP has been emailed 3 times and is still yet to let me know what he is doing to help his constituents affected by this departments closure. It has been very time consuming and whilst I have been very grateful for the distraction at times I can’t help but feel guilty that Mr Myasthenia Kid has just lost his father and maybe I am not being present enough for him.

This week I have sent out a hard copy of the original email to my MP via recorded delivery in an attempt to spur him into action. I have also contacted my Doctors surgery as I wanted to ensure they were aware of the changes at Derriford and it isn’t just me that this impacts at the practice. Plus the gp surgeries will have a say in the clinics that are commissioned by the CCG and around 90% of general practitioners don’t understand what PoTS is or how to treat it. Plus most pharmaceutical treatments are consultant level drugs so can’t be prescribed by a gp without a hospital consultants say so. So it is vitally important for the Doctors of Devon and Cornwall to have someone they can consult with regarding the care of their patients.

It has been exhausting and frustrating in equal measure. Many people are too sick to fight for themselves and some people for whatever reason just don’t feel like they want to get involved despite being a member of the group. Which is sad, because if you can’t fight for yourself who is going to do it for you. I also feel a terrible weight of responsibility that if we can’t keep the clinic open in a meaningful way that I have failed. 

Many of the organisations that I have come into contact are too busy passing responsibility for the commissioning of the clinic onto others or they simply say not our problem. It is sad that very few organisations want to stand up and do the right thing by these patients. Without this clinic there will be many more hospital admissions, people being labelled with psychiatric diagnoses and people just not receiving the right treatment. Which is just disgraceful when figures show around 60+% will go back to normal levels of functioning with the right treatment.

The bureaucracy is a travesty, people are hiding behind policies or the fact there are no national treatment guidelines for PoTS / Autonomic Dysfunction meaning many people are already missing out on these treatments that could be life changing. With the advent of Covid and the condition Long Covid having an impact on the autonomic nervous system we need more clinics dealing with autonomic issues regardless of how they have come about, not less. No one seems to see this issue or they just pay lip service to it.

It seems that a lot of people in positions of power don’t care about other people’s suffering as long as they are ok. It is also sad that our elected representatives seem to forget we pay their wages. So they should be working for their constituents.

I won’t stop trying though, no matter how long it takes, I will get our voices heard. 

Back from my blogging break

I am sure regular readers will appreciate why I had to take a break from blogging. Well I am back, my health is shit, which I fully expected with all that has gone on. Something had to give so since I last wrote I have endured a hideous kidney infection that almost saw me hospitalised, a flare up of gastritis that has stopped me sleeping as it has been so painful. Then add in vertigo and a couple of migraines that has been my last few weeks. I needed to take a breath and just focus on my boys, my little family and get through this awful time. 

I think I can speak for both me and Mr Myasthenia Kid that we have been blown away with all the cards we have received, messages etc. People contacting us to ensure that we were ok, dropping my medications around, offering to take Dembe out, getting shopping for us. We needed that help and it was very much appreciated.  Whatever they could do to help, nothing was too much trouble. 

I also want to say a huge thank you to those of you who made charitable donations to MND, on Rogers behalf that was exceptionally kind of you.

Grief is such a weird thing and what Jay and I were really shocked by has been just how very tired we are pretty much all of the time. Most days when Jay is day off work we can be looking at each other at 6pm and asking if we are going to bed. What we forget is for about 6 weeks prior to Jay losing his dad things had been pretty stressful. Whenever his mobile went at an odd hour – very early morning, late at night my heart would stop. I would dread whatever the news was that we were about to receive. We realise now how very draining the situation was, how we were constantly living on our nerves. Both of us are having issues trying to get  back to a normal state. After weeks of sleeping lightly we are both still waking at the slightest sound. I am sure given time we will start sleeping better.

At the moment we are just making our way through each day as best as possible. All I can do is be there for Mr Myasthenia Kid, take care of the small stuff so he doesn’t have to worry about anything else. Both of us have developed the attention span of gnats and memory spans of a goldfish. It makes things tough and it would be quite easy to get angry about the others lack of attention but we know that the anger is also another part of the grief.

Mr Myasthenia is struggling but putting a brave face on. I know that he wants to be strong and in control but I do worry that at some point in the future this approach may bite him on the ass. He has always been one to bottle stuff up and I don’t want to become a nag continually asking him how he is doing. He will speak to me when he is able.

I do understand with living away from his parents how he can insulate himself from the reality of what has occurred. He doesn’t have to deal with the issue because he can pretend that it hasn’t happened. He isn’t confronted with the reality every day. In some ways that is good and in others I worry that it will prolong the acute stage of grief as he will keep pushing it down and not dealing with it.

He has been very keen to have some photos of him and his dad around the house. I framed the order of service from the funeral so that he has that  and I managed to find some wonderful photos of Jay and his dad at the NFL match at Wembley that watched in 2008. One of his brothers also found a really lovely one of him with Roger so I have got that in a treble aperture frame.

During the bank holiday weekend we were lucky enough to go down and visit Mr Myasthenia Kids mum. We held the meeting outside in the garden. In the sunshine it wasn’t too bad and the garden is very sheltered. It was nice to be able to pay my respects in person, although a two hour visit wiped me out for the rest of the day. It has been around 6 years since I had a proper visit, although we had a flying one in December last year. Dembe certainly enjoyed the garden and being chased around by Jays brothers new puppy.

Things have been all over the place in the last 4 weeks or so. Most of the time I am struggling to remember what the day of the week is let alone anything else. I am now trying to get back into a routine so that things feel more settled. 

Having Dembe has been a godsend, he has instinctively known on the days when Jay is struggling and spent the days squidged up to his dad on the sofa and at night sleeping in his room.

Health wise I am waiting for a neurology appointment. The hospital rang a few weeks ago but I had to decline as it was the same week as the funeral. I wasn’t ready for the added stress of seeing a neurologist and I didn’t want Jay having any added pressure that week.

I received my second Covid vaccination on Tuesday 4th May. We are still waiting for Jay to get called for his but he has a few weeks yet before the 12 weeks is up. I am happy to report that I have had absolutely no side effects from the second vaccination. I was expecting that I may end up floored by it like I was with the first one but nothing at all. Not even a sore arm. Fingers crossed that Mr Myasthenia Kid gets called soon.

We are taking a break from Dog training for a bit as we both just don’t have the mental capacity for it at the moment. We are both crawling into bed most nights just after 7pm and asleep not much later. We have also been sleeping until at least 8am when Jays shifts allow. We are just so very knackered. It has been like 100 life times has been crammed into the space of a few months and currently physically and mentally we have nothing left to give.

I will try to blog regularly again but it maybe hit and miss for a little while longer.