Invisible Illness Week: my 30 things…

So there I was in some public loos the other day. I wombled over to the sinks to wash my hands and blearily looked up at the mirror whilst I was there to see whether I still looked human, hehe. But, what the….? I had no reflection! I could see the reflected doors to the cubicles that were behind me, but I wasn’t reflected. Egads! Is this the reality of living with an ‘Invisible Illness’?!

Invisible illness, no reflection

Oh. No. That’s not it. Can you see what really happened?! 😉

This week is ‘Invisible Illness Awareness Week’. There are hints of my health conditions if you know what you’re looking for, but otherwise they’re below most people’s radar. Unless I’m actually using my wheelchair most people would be hard pressed to comprehend that I am disabled.

So I thought I’d reply to the ’30 things’ that get asked during this week each year. The official website says it’s ‘National’ awareness week, but we know that that means international to us cyberpeople, right?

Okay, here’s my responses to the 30 questions…

1. The illness I live with is: Complex Regional Pain Syndrome (CRPS), Autonomic dysfunction (Dysautonomia) and hypermobility (I’m off to see the hypermobility / Ehlers Danlos Syndrome consultants tomorrow)

2. I was diagnosed with it in: October 2005 (‘it’ being CRPS)

3. But I had symptoms since: my injury in August 1999 (a mere swollen knee!)

4. The biggest adjustment I’ve had to make is: trying to not feel as if I’m no longer ‘useful’

5. Most people assume: I’m not ‘that bad’ generally and that if I seem okay I’m not experiencing any symptoms or pain

6. The hardest part about mornings are: very carefully getting my body up and functioning for a physio’ without making my symptoms flare up too much

7. My favorite medical TV show is: Ick! I can’t look! The only medical stuff I’ll watch is if it is scientific and informative (and even then I’ll hide my eyes if there’s any squidgy / icky moments!)

8. A gadget I couldn’t live without is: my laptop! I love you Possibly-Betsy! (Oh yes, and the wifi)! (Please feel free to make any alternative suggestions for naming my laptop! 😉 )

9. The hardest part about nights are: trying to get the pain low enough to be able to get to sleep. It takes aaages and then I repeatedly wake up through the night. Fun times!

10. Each day I take __ pills & vitamins: 2 meds and 7 vitamins / supplements

11. Regarding alternative treatments: My conditions mean that multiple systems in my body are dysfunctional and very sensitive to changes. Adding pharma chemicals into the mix is problematic and incredibly complex. So I will only consider taking meds if the potential for quality-of-life improvement outweighs the potential problems (and then I have to try it to find out if the side effects are worth it too)! Alternative treatments are a great resource… for example: once we become aware of the damaging effect of the excessive number of free radicals in CRPS bodies, then it is important to increase our anti-oxidant intake – we can do this through food but the amounts required mean that most of us take supplements as well (like CoQ10). This isn’t something my doctor is aware of, it’s something that expert patients find out through diligent scouring of research and sharing of information, the doctor sees these kind of supplements as alternative, not mainstream, not medicine. Whereas we see them a a perfectly sensible scientific response to our inner chemistry and long term prognosis. So, as CRPS is so complex and multi-systemic, there are actually some very useful alternative resources which can help to rebalance our very unbalanced chemistry. I’ve also had acupuncture, which is often seen as alternative therapy, but my treatment was as part of mainstream medicine in the NHS. So ‘alternative’ can mean different things depending on the viewpoint. With conditions like this: research and try things out, and the less chemicals we put into our body the easier it is to rebalance our unbalanced systems. I even have friends who are healers who have offered me healing, and friends who are religious who have offered to pray for me, and I figure.. why refuse?! x

12. If I had to choose between an invisible or visible illness I would choose: That’s a tricky one. I kinda have bits of both and it varies depending on how symptomatic I am, or whether people see me during my physio’ time or when I’m recuperating afterwards. Having an ‘invisible’ illness means that people don’t treat me any differently, which has it pros and cons as sometimes I need people to be aware of my limitations as I can’t do everything that other people can do, and I need them to avoid doing things that can cause me problems (the slightest touch on bad days can be a problem). Whereas the times where my illness is more ‘visible’, for example when I’m using my wheelchair or crutches, means that people react very differently to me (there’s a whole blog post in that concept alone, which I’ll get to!). I think that the fact that I have aspects of both is probably pretty good, as those around me get to see me as both.. and then the consistent aspect is me, rather than a health issue that is either visible or not.

13. Regarding working and career: 6 years of living with CRPS and I had to give up work, I got my diagnosis soon afterwards. I carried on working towards my goal of training as a Clinical Psychologist with the intention of completing post-graduate training in neuro-psychology (so that I could help to support and empower head-injured patients and their families). It soon became apparent that full-time was out of the question, and that maybe even part-time work would never happen either. I’ve just completed my masters degree in research by studying from home. Living with my health conditions is a full-time job, everything else is ‘as and when’.

14. People would be surprised to know: just how bad my brain issues get at times. If I didn’t understand why they were occurring I would be really really scared… Not understanding people, missing fundamental concepts on conversations, losing my vocabulary, no longer being able to spell, not remembering ever seeing a film that I went to see with Magic Dude just a couple of weeks ago, and so on. Most people think I’m really intelligent, haha! I still have the same intellectual capability when I’m not symptomatic, but I am symptomatic to varying degrees all of the time now so, yeah, most of the time I am not the brainbox that my friends say that they think I am!

15. The hardest thing to accept about my new reality has been: not getting to be a Mum. There are no words to describe the sadness that I am trying to put to one side for the moment. Part of me still says ‘maybe’, and then the rest of me laughs at that part of me for being such a blinkered soppy girl because I’m just not well enough. I adore being an aunty to my Magic Dude’s two nieces, and hanging out with my friend’s 4 year old, and another friend’s one year old, I just love love love it! So that will keep me going, I embrace my aunty-ness! 😉

16. Something I never thought I could do with my illness that I did was: Start learning Kung Fu! The Tai Chi started a couple of years ago but I’d written off what I thought of as fast-paced martial arts that would involve bodily impact. I never knew I’d end up with such an awesome teacher that is used to working adaptively for people with various injuries and health conditions. 🙂

17. The commercials about my illness: Haha, what?!….
“Try new improved CRPS for all your screaming needs. The pain is shown to be so severe it is even champing at the heels of terminal cancer. With additional multi-systemic complications and extreme comorbidities… Try new improved CRPS, now! Available for all ages.”
In the UK we have adverts for health charities I suppose, but not for health conditions. And the info’ on CRPS is rarely comprehensive even when someone medical has actually heard of it. Hey, maybe adverts is a good idea after all….
“Have you turned away a patient in pain that looked healthy? Have descriptions of extreme pain from minor injuries baffled you? Has a patient described a paradoxical set of symptoms that make no sense to you? You need to know about CRPS! Call now for training…”

18. Something I really miss doing since I was diagnosed is: seeing my friends (with the exceptions of Magic Dude and my Local-Friend-for-Local-People, I see them quite a bit 😉 )

19. It was really hard to have to give up: my future career

20. A new hobby I have taken up since my diagnosis is: Tai Chi

21. If I could have one day of feeling normal again I would: Do the adventure playground thing clambering through the trees, go cycling/walking/jumping/skipping/dancing through the countryside with Magic Dude, and then dance the night away in a rock music nightclub!

22. My illness has taught me: a lot of chemical biology and neurology that I never realised I would need to learn!

23. Want to know a secret? One thing people say that gets under my skin is: when “people” is doctors……. when doctors say “I’m sure it’s not that bad” and dismiss the issue

24. But I love it when people: have respect for my health management skills, attitude and informative input

25. My favorite motto, scripture, quote that gets me through tough times is: “This too shall pass”

26. When someone is diagnosed I’d like to tell them: The so-called ‘stages’ of CRPS/RSD do not exist – they were dropped back in 2005ish as they just didn’t apply – so don’t be afraid – you’re not on an inevitable slippery slope, you’re on a journey with a condition which can be calmed and worked around. I’d also like to send you lots of love and let you know that you’re not alone, there’s a lot of fellow patients out here if you need us, xx

27. Something that has surprised me about living with an illness is: how blummin’ determined and capable it turned out I was! Who knew?!
Also.. how inner peace turns up in the crappiest situations, how joy shines through severe restriction and limitation, how those who abandon ship can be people that we thought never would and how those who choose to remain or step into our inner circle are some of the most beautiful souls we’ve ever known.
I know myself better now than I ever did, and I have a path to tread. Illness is not the end. It is change. And I am more ill, challenged, pained, symptomatic, aware, at peace, stubborn, quietly confident, filled with love and happy now than I have ever been. Paradoxical much?

28. The nicest thing someone did for me when I wasn’t feeling well was: Knowing that I might not be tip-top, asking me if I was okay and to let them know if I needed anything, x

29. I’m involved with Invisible Illness Week because: I live with several invisible illnesses, I blog about my experiences, I research the conditions and share what I find with other patients, I spend a lot of time doing advocacy work for fellow patients, and because the ideas of disability are generally based on false concepts of visibility and consistency.

30. The fact that you read this list makes me feel: Honoured, x