Do you ever stop fighting?

This week has been a bit of a nightmare. Just so much to take in, but some of it, thankfully, is positive. I wanted to update people on my health & what I'm doing as I realise I haven't been in touch as much as I should. I started relapsing in September, and unfortunately has been a steady decline. We are trying to get things in place to stabilise me and get things back on track.

I started rehabilitation at Newcastle General Hospital about 7 weeks ago now. I can't fathom what a difference it's made to me for a number of reasons. I have made a lot of new friends. Having similar conditions themselves its been so easy to talk to them & get advice on different things. The group is nice and relaxed (we do relaxation for 1/4 of the session) and we do gentle exercises to focus on particularly stabilising our pelvis and building up muscle strength. I have took little steps each week, and with much hard work I've seen a huge improvement. At the start, I could manage 3 sit to stands (sitting on a chair, standing up, and sitting again) before having to stop due to feeling exhausted, dizzy and like I was going to collapse. This week, I managed 12. So in 7 weeks I've quadrupled what I was able to do in some things. The other exercises are a lot easier as they're done lying down, and I still struggle a lot with anything to do with my arms as my shoulder dislocates, but overall, progress. I wish this was available for more people, I'm so lucky in a way I got told I was 'too complex' for the other clinics and ended up here, after a 6 year fight.

We've had some issues with the GP's. It feels like a constant fight for what I need. After many blood tests (long story short, they forgot to do the ones I needed) I found out I've got a B12 serum folate deficiency. My B12 is low. My Vitamin D needs to be double what it is. And, my thyroid level is too high. I was a bit overwhelmed after self diagnosing the B12 deficiencies and getting the blood test to confirm it. Now, even though I'm deficient, I've been told 'no action is necessary' which is crazy. It has such a huge impact on my ME that it needs seeing urgently. So, I've booked an appointment and I've got all my evidence with me to back up that I need more investigations, B12 injections and some more tablets to help me stabilise. I'm lucky that it was actually one of the women at rehab who told me about the effects of low B12. If I get the right treatment, it could make a huge difference and be quite an easy fix for most of it, so I'm battling to get the right support for this!

Another mix up with the doctors means I'm still waiting to see a gastro specialist due to my continual loss of weight and intolerance's. This, undoubtably, will be linked with my EDS. I'm also waiting to see a phycologist who is based at the CRESTA clinic to start some kind of therapy/counselling which I'm pretty desperate for.

Alternative therapy
I'm still having acupuncture, which helps with my pain so much, and that's going well.

Other things which are going on
I haven't been to college in about 3-4 months but starting next week I'm going to go in for an hour a week and do some art. I still have carers and the enabling is going so well - we have a right laugh. I'm spending most my time in bed at home but when I'm well enough in the evening I come down on my recliner and spend time with my family, which is so lovely.

So yeah, my health is providing a number of obstacles at the moment, but nothing that I can't beat. I'm hoping this information could be useful to those who are struggling to get help - keep fighting!

Kate x

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