August update

It has been an odd couple of weeks since returning from my appointments in London. In some ways things are no further forward in feeling better but things are being put in place now to make things on one hand easier, yet also in recognition that I'm in this for the long haul.

I had my first physio session. This went really well and the physio was lovely, helpful and has been doing a lot of research on what I can and can't do. While lots of recommendations online suggest swimming and biking, I'm not ready for any of that yet so am starting from scratch. I have some leg strengthening exercises and some arm exercises and have to keep a diary of how I'm getting on with it for a review in a few weeks. The first few days of exercises were really tiring but I'm getting into the swing of it a bit more now. For my arm exercises I have to lift cans. I found every can in the house and have been working my up the weight scale. I do have my suspicions lifting spaghetti hoops is cheating due to the holes in them!

My GP has also been amazing. She's just gone on holiday for several weeks but has taken readings on dysautonomia and connective tissue disorders with her. Before she went, she and another GP sat down and made a hospital admission plan for me as well as updating my notes at the surgery so that if I turn up I'm taken very seriously. I'm very glad she did this and have already ended up putting it all to use- though I would have rather not have had too. My last appointment also showed I've lost even more weight and am now off the scale for the online NHS BMI chart and am down to kids doses of tablets. This was disappointing news as I've been eating more and had hoped to at least have started maintaining weight. Never mind though- all the more reason to increase my chocolate intake!

My Mum also deserves recognition for everything she is doing to help me at the moment. She's often up at 5.30 in the morning to make sure I have everything I need for the day and am ok before working a long day and coming home to have to help again as there is a lot I can't do unattended or need a lot of support with. Neither of us obviously expected this but she carries on and doesn't make a fuss about how much she has to do.

Unfortunately I've done a terrible job at staying out of hospital! On my bucket list I wrote in January that I wanted a year of being hospital free, I now think a month would be an achievement! I had another bad weekend with fevers, pains and dizziness and went to see the doctor the following week who sent me straight up to hospital to be admitted. I spent some time in resus and then three days on a ward attached to drips- however thanks to my hospital plan they knew what I needed and it was a relatively quick stay. The consultant though did reiterate that they can only symptom manage as much as possible and they are expecting me to be admitted every few weeks as I have a flare and can't cope at home. Not really the news I wanted to hear again but I do feel better with the plan and knowing what is happening.


With my increases of hospital admissions I've also had an increase in falls and with an increase of falls and increase in injuries! I've managed to split open my lip, shred my hands falling over with glass and had two head injuries in the last few weeks as well as an assortment of coloured bruises. Luckily I have a high pain threshold and nothing has been too serious.

While the last few weeks have continued to be challenging I've also realised how lucky I am. A couple of years ago I spent time working in a hospital in Uganda and got to spend time going out on palliative care and physio therapy outreaches. People didn't have access to strong pain medication or wheelchairs, there wasn't facilities to work out what was wrong and if it was fixable and yet I get all that and it's free thanks to the NHS.

I also have a support network and know if something goes really wrong someone will be there and will help me to pick up the pieces.

I don't have to worry about not being able to make meals, or do housework and if I can't get out of my pjs one day it's not the end of the world. For all that what is happening is terrible I've realised just how incredibly lucky I've been in all of it too.

To end on a positive note I now have a bird feeder outside my bedroom window and get regular visitors now throughout the day!

I also managed to make it out for a short trip along the seafront, thanks to Rollo, on my Mums birthday. I was worried I would spend the day tucked up in bed so this was a big deal. The dogs came too and we returned to make cake with a lactose free recipe!

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