Hospitals, Spoons and the ‘P’ Word

Hello, there. I hope you are having a fantastic Tuesday. I’m currently writing from a room that’s eerily similar to one I occupied in my first year of university (minus the bullying that happened daily…thank god) and it’s rather nice to be back in such a social environment but with less of the stress this time round. This week I’ve been working at a Talent Development Program at my university and it’s been a lot of fun. I’m mentoring a group of soon-to-be undergraduate students and am helping them to complete a presentation on a particular topic. The presentation itself will be assessed by professors of the university, so I can imagine they’re feeling a little intimidated at present (though I know they can do it!). It is a lot of work, but it’s a breath of fresh air to be back in university working with students and my group are all wonderful.

Despite the fantastic week, I have had a fair few appointments/medical emergencies and my spoon supplies are feeling just a little bit depleted so I’m snuggled in bed as a consequence (for the ‘Spoon Theory’, if you don’t know what it is already, head over to But You Don’t Look Sick . It has become a fantastic way for many with disabilities/chronic illnesses to articulate their experiences to those without chronic conditions). This all started on Friday. Things were relatively great until then and I was just about managing to cope with things/have enough spoons to do the things I wanted to. Michael, a close friend from university came over, (he has been working on the same project as myself at uni so came to stay with me) and we spent lots of time catching up, sipping G&Ts and watching wonderfully silly things on tv. It was fabulous…

… until Friday afternoon. We went for Italian food, which seemed innocuous enough. And so we enjoyed pizzas and chatted a while and then strolled home feeling rather content.

Until my body decided it had other things to do, that is.

It all started with itching…lots and lots of intense itching all over my scalp and face, which made me want to scratch my skin to shreds. It all happened so quickly but by the time we got to my flat I was so uncomfortable I tore off my clothes and desperately hopped into a cold shower. Nothing was alleviating my skin and by this point I was covered head-to-toe in a violent, angry, itchy white and red rash. Nothing escaped; it was all over my back, my chest, my legs…and maybe unsurprisingly, I began to panic. I became dizzy and light-headed and by this point I was running around the flat naked (I know, poor Mike!). We took the decision to ring an ambulance as soon as I found I was struggling to breathe and the paramedics burst through the door to me, completely stark-naked, struggling to breathe in a heap on the floor. It was probably hilarious.

Turns out I had a severe allergic reaction, although I’m yet to find out what it was brought on by. I was given a strong dose of anti-histamine by injection and was offered to be taken to hospital. I politely declined and thanked the wonderful paramedics for all their help (whilst apologising for my initial lack of clothing…im never going to live that down, am I?!) and that was that. it was over almost as quickly as it had started but I have been strongly advised to go for an allergy test.

Not only that, but yesterday I went to see a consultant neurologist for my hemi. The fabulous news is she’s referring me to orthotics, physios AND an occupational therapist, which I’m absolutely thrilled with and I’m hoping they’ll all be able to relieve my pain/help out even if only slightly. it would be a fantastic help to the quality of my life. Today I went to my weekly pain management appointment which was painful, but I am starting to see results in terms of muscular pain so I’m willing to put up with the short-term pain for now.

Tonight I have been thinking, and I’m just beginning to realise that this will probably be the way things are for a while this year, but I think that’s okay. I know I shouldn’t feel guilty about receiving all this treatment but I do, I really do. Sometimes I sit and think that I make too much fuss/that I shouldn’t be feeling the way I do because, although I do struggle with pain and hemi and MH and everything else, I am so SO lucky to have been given a life like this one. I guess it’s okay that there will be hospitals and things probably for the rest of my life, and I need to understand that I’m entitled to that. Really it just makes me feel hugely fortunate to have such wonderful healthcare available, because I honestly can’t fault any of the care from my recent appointments. I don’t really know where I’m going with this post, but I felt like I needed a good old talk about things. I think tonight i’ll just stay in bed and wind down.

Hope you’re having a great Tuesday, whatever you’re doing.

Heather x

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