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

Advertisements

Life can be a pain, sometimes

I say this with all seriousness. Life can be a pain for anyone, of course. There’s the usual stressors of everyday life, sometimes there’s issues with friends and family, and sometimes there’s problems at work.

However, for some people, life isn’t just a pain: life can be painful, too.

Having Scheuermann’s disease and cerebral palsy means that I live with chronic pain. Though it is a common misconception, having chronic pain doesn’t necessarily mean the pain is severe; it simply means that the pain lasts for an extended period of time (the word chronic is derived from the Greek ‘chronos’, meaning ‘time’). So, to put this into perspective from my point of view, if I’m talking about my back pain, I haven’t been free from that for over seven years now. That’s right. Seven years of pain occurring pretty much every day. So what does this constant pain mean? How do people living with chronic pain cope? And finally, how does it affect the way I live my life?

I’ve always found it difficult to articulate what living with chronic pain feels like. I’d like to say that the expectation of having pain is a constant thought in the back of my mind. Pain is the last thing I feel at night, and the first thing I wake up to in the morning. Yes, it hurts, of course it does, but there’s ‘good’ days and ‘bad’ days. There’s days where the pain is barely noticeable, but there’s days where the pain is all consuming and it stops me doing normal things. I like to think of my pain as a Bunsen burner flame. Like my pain, the Bunsen is always on; but the flame burns more strongly when you add oxygen to it. Like the flame, when I do too much (just adding more oxygen to the Bunsen) I can exacerbate my pain levels, and the pain becomes ‘stronger’ or worsens.

Sometimes this happens without prior warning. I don’t necessarily have to have done anything in particular to exacerbate my pain, (this can be really frustrating) but there is usually a reason why. Silly, I know, but sitting for an extended period can exacerbate my pain levels, as can standing for too long. I’m constantly needing to strike the perfect balance. If I go for a long walk, I have to be prepared that I may be in more pain as a result, from both my Scheuermann’s (abnormal curvature in my thoracic spine; I’ll explain all in a later post!) and cerebral palsy. It’s a really odd thing to talk about, and it sounds so silly, but I’m constantly aware that each day will bring different levels of pain. Being in constant pain means there are things I cannot always do, though when I was younger I tried to ignore the fact I wasn’t necessarily able to do everything that I’d like to. Going to the cinema is pretty painful, and as much as I like going out to eat in a restaurant, the extended period of time sat down means that can become quite a painful experience. I’ve recently had to accept that going out clubbing isn’t really the best thing for me. Being on your feet all night coupled with the fact you’re constantly being pushed into by drunk dancers doesn’t make for comfortable entertainment! Studying for university can become difficult, but I’ve learnt to deal with it by constantly working and reading, so that if I need to take a day off then I can.

There are various ways I cope with my chronic pain, so I’ll try to list them;

1) take painkillers as and when I need them.
I’m prescribed quite a hefty amount of analgesia, but only take tablets when I feel I can’t cope. I’m often described as having my very own pharmacy in my room, and I can’t necessarily dispute that!

2) use heat pads/various other heated products
I have a heat pad that brings great relief when I’m struggling. It’s basically like a miniature electric blanket and you can adjust the heat setting. My dad bought mine from Boots and it was such a great buy!

3) learn to take it easy
This has been really difficult for me. I’m quite an anxious person naturally so I tend to want to rush so that I get everything done as quickly as I can. In light of this I’ve learnt to give myself a break when I need it. Living with constant pain can be extremely draining both physically and mentally, and I need some quality time to recuperate.

4) have the occasional glass of wine
I’m not saying this and justifying it, however I have found that if I’m not prepared to deal with the side effects of my medication when I’m really bad, (drowsiness, euphoria, itchiness) I’ll have a small glass of red wine maybe about once a week. I don’t drink a lot of it, but I do notice it definitely helps to relax my sore muscles.

5) be happy!
Though things can be difficult at times, I’m truly happy and extremely privileged to live the life that I live. I’ve had a lovely upbringing, been to school, achieved great grades and I’m now studying at university and I’m expecting to finish my final year in 2015. Trying to keep happy means I take time out to do things purely for the pleasure of doing things. I like to watch rubbish telly in bed, I like to have the odd takeaway and not feel bad about it, and I like to spend time with really supportive friends and family. I’m very lucky that the university I attend is really supportive and adjusts things as and when I need. They’re truly great and I know if I’m having a particularly painful day I can inform my department and know that there’s support there if I so need it.

Living with chronic pain does mean I’m constantly accounting for ‘bad’ days or ‘bad’ parts of days. I found a theory someone came up with to describe this, and they have described it so wonderfully I don’t think I could possibly add anything more to it. It’s called the ‘Spoon Theory’ and was created by Christine Miserandino. Click on the link below to find out more:

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

I’m aware that this has been a pretty long post, and if I’m honest I could add so much more to this and be writing for days. However, I don’t expect any of you would have the patience to read it (I know I wouldn’t!) So I’ll stop there for now.

Best wishes and I hope your week is going well!
Heather