Invisible Illness Week 2014

Invisible Illness Week is 8th-14th September and the 30 questions are in circulation again. So here’s my answers for this year, it will be interesting for me to see how different they are from last years answers too..

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30 Things About My Invisible Illness You May Not Know….

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1. The illness I live with is:

Multi-systemic – it affects entire systems in my body with multiple ongoing issues all day every day…

faulty autonomic nervous system,
which affects the central nervous system,
plus unhelpful neurological re-wiring and
a compromised auto-immune system.

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So I have a terrible disease but not to worry

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2. I was diagnosed with it in the year:

CRPS in 2005

Dysautonomia 2014 finally in writing, though it was diagnosed verbally back in 2010

Partial Hypermobility 2014, as the mega ‘growing’ pains and clicky joints were dismissed by my childhood GP despite my Mum’s concerns

Degenerative issues in hips 2014

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3. But I had symptoms since:

CRPS since 1999

Dysautonomia since 1999, it kicked in within weeks of the CRPS with IBS, closely followed by a tendency towards low blood sugar and body temperature dysregulation.

Hypermobility always (also affects the autonomic system)

Degeneration in hips over time – a development potentially related to the hypermobility

All of these conditions are inter-related. The issue from birth was the hypermobility… which can affect the autonomic nervous system but I experienced no major issues there originally.

The pre-disposition to autonomic issues and the priming of nervous system default responses during childhood resulted in the development of CRPS (which involves faulty pain signals through the ANS) after a minor injury… which had the knock-on effect of more autonomic issues developing over time (some within weeks, others years later after a trigger event).

Plus the long term hypermobility has also had its own effects on my joints.

So it’s all very over-lapping.

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4. The biggest adjustment I’ve had to make is:

Learning how to still be *me* despite the massive lifestyle changes.

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when life gets harder

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5. Most people assume:

That I’m not that ill <facepalm>

(because I usually look and sound fine when they see me during my physio’ which is the tiny portion of my day where I’m mostly functional) :-/

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What you see depends on what you look for

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6. The hardest part about mornings are:

Having to wait for hours to actually be able to move about with less extreme pain and/or less extreme near-fainting.

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7. My favorite medical TV show is:

Scrubs 😉

(In the UK medical programs are all soap operas. We also have documentary series which might occasionally cover a health issue).

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8. A gadget I couldn’t live without is:

The kettle!

(because my hot water bottle is a permanent fixture in my daily pain management *and* the kettle also enables cups of tea!)

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9. The hardest part about nights are:

I know I should probably say the pain, or the fact it never ever ever goes away, or the silent tears that might escape every once in a while when it gets so hard to just keep fighting when even sleep won’t grace me with it’s assistance. But you know what really bothers me the most? Trying not to wake Magic Dude up coz the headboard creaks when I shift position when I’m sitting up!

(He says I shouldn’t worry about it but I’d rather he got more sleep)!

That not to say that it’s worse than the other things, just that the other things are permanent and horrific so I tend to focus on the fleeting or non-health aspects of the toughest stuff to help me to deal with it!

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10. Each day I take ? pills & vitamins:

9, plus painkillers when required (with occasional anti-inflammatories though I try to keep away from those if possible owing to detrimental long-term effects)

Bitstrips, meds and supps

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11. Regarding alternative treatments:

‘Alternative’ can have many interpretations. If we’re going down the ‘anything that’s not prescribed’ route… even 8 of my 9 pills are supplements crucial to assisting my body cope with this condition. I ‘pace’ my activity to manage my pain (because it retrains my autonomic nervous system to not over-react). I don’t just do functional movements at home I also attend classes to further strengthen my muscles, improve my balance, work on my awareness of surroundings and where parts of my body are during different movements etc. I also attend a tougher class once a week as I find that this enables my nervous system to compare the rest of the week with that hour rather favourably which also helps baseline pain levels! I’ve had acupressure, auriculotherapy (non-invasive acupuncture on the ears) and even carefully applied acupuncture (they didn’t help the respiratory issues because the faulty de-fault had been set in place for too long, but it was worth a try especially as it was available on the NHS which, by my own description of alternative being non-prescribed treatment, renders all that as mainstream medicine now anyway). I use helpful psych tools for dealing with problematic symptoms of my conditions and to work through any negative feelings I may experience about various aspects of my health (these are available through pain management teams on referral but I acquired these skills myself partly through my psych’ studies but mostly through self-searching and trial and error). I learn much about my own conditions so that I can logically work around the health issues and give my body a better chance of coping with all that is wrong within it. I also happily accept reiki healing offered by friends.

My conditions mean that meds are very problematic in various ways, so doing all that I can to try to keep things vaguely functional without adding the negative effects of meds is reeaally helpful.

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12. If I had to choose between an invisible or visible illness I would choose:

I have both depending on whether it’s during a paced active part of my day and how much various symptoms may be playing up in that moment. Both have their pros and cons, but having both gives me the extra insight which I can employ usefully by helping others, sharing insights and so on.

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13. Regarding working and career:

Work is not just paid employment so although the psych career went down the pan for me I have the 24/7 job of keeping my body functioning as best I can which includes trying to keep up with the latest research when I have enough Brain to make sense of strings of words. My hands are full just with that. When possible though I also spend time assisting in a couple of support groups (albeit rarely at the mo’ as I’ve been more symptomatic of late) and the infrequent addition of writing of course. 🙂

What's wrong with my brain

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14. People would be surprised to know:

How bloody awful I feel at any given moment!

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Pain scale with continuous smiling!

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15. The hardest thing to accept about my new reality has been:

How much it keeps me from doing really worthwhile things that would help others e.g. starting a charity as a healthy person would not take two or three years just to get to where we are with it now. It will be really helpful when it’s set up, but it’s so frustrating to be kept from doing things when there are good things to be done, it just means that everything is so slow going.

(Or, more personally, the people I’ve lost as a result of the effects of these conditions. But I’m still steering around that a lot of the time, although at least I’m finally coping better with it now it’s four years on, x)

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Start where you are, use what you have, do what you can

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16. Something I never thought I could do with my illness that I did was:

Start learning martial arts (albeit adaptive, but many able bodied people have injuries to work around so really ‘adaptive’ is a typical approach, or should be anyway).

when nothing is sure everything is possible

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17. The commercials about my illness:

That’s a very US thing, as the UKs NHS is now mostly privatised and getting more so I would not be surprised if we started seeing things like that over here eventually as it will lean more towards insurance for health care and all the knock-on effects that entails. There is certainly very little awareness of CRPS and Dysautonomia in the UK, even amongst most medical staff though, and I would be surprised to hear anyone talking about CRPS or Dysautonomia.

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18. Something I really miss doing since I was diagnosed is:

Dancing. Not professionally or anything, just dancing for the enjoyment of it.

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19. It was really hard to have to give up:

The career path I was working towards.

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Problem or how we percieve it

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

Tai Chi

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21. If I could have one day of feeling normal again I would:

Skip! I would skip gleefully and laugh a lot!

Of course there’s so many things I’d want to do and any of them would be awesome, but the first natural thing of the moment would be to laugh with pure elated, unabashed, incredulous glee and skip skippety skip! (There’d probably be a cartwheel pretty soon after that, too)!

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22. My illness has taught me:

That I am stronger than I ever knew and in more ways than I realised.

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you decide how your soul grows

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23. Want to know a secret? One thing people say that gets under my skin is: 

I don’t expect much from non-CRPS people, not in any objectionable way at aaall, but simply because how could they ever be expected to know about such a complex and little-known condition? I certainly wouldn’t have prior to actually having the condition, and it took several years even after I was diagnosed to find out. But when doctors doubt the fundamentals of the condition(s) I have, or start down the “and what makes you think you have CRPS?” route…gah! It’s okay, I mean I can pull them back down to earth with a thud when I point out that I was diagnosed by one of the countrys top specialists courtesy of my medical history and an MRI scan as the clincher, but it’s the time it takes you know? It’s wearing having to explain basics to doctors all the time, and it’s a waste of valuable time.

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Arse from elbow

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24. But I love it when people: 

Check to see if I’m okay to do something because they know it might cause issues in my body. It gives me a chance to say if I’ll have trouble doing that today and it doesn’t put a damper on things because *that’s* why they asked. Looove those friends  😉

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25. My favorite motto, scripture, quote that gets me through tough times is:

“Be the change you want to see in the world”

I still use “This too shall pass” (a lot!) but I fancied including this other quote as it is a huge motivator for me.

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26. When someone is diagnosed I’d like to tell them:

Anti-oxidants!
Pacing!
Beware of outdated and incorrect info’ online!

Anti-oxidants..
Inc Vit C up to 500mg at a time (because that’s all the body can absorb in one go) 2-3 times a day. This is also a good thing to do before and after any invasive procedure (even dentist appointments) and 2-3 months after the event is common advice.

Many long-term CRPSers take vit C every day.

Antioxidants are so important to the long-term health of our mitochondria. I also take Co-Q10 every day.

Pacing..
the same amount of activity every day no matter what the pain levels. Starting with a few minutes if that’s all that’s viable is fine because it’s keeping it consistent that is important in retraining the autonomic nervous system to not set off the inner alarm bells every time you move. Eventually this will reduce the pain baseline and improve quality of life and it will even out the days instead of having good days and bad days (which we perpetuate by doing more on good days thus causing bad days and which is the worst thing we could do because it reinforces the faulty autonomic over-reaction, and hence the circular hellishness goes on if we do not pace)

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Online info…

The ‘stages’ were discarded in 2004.
The ‘types’ were a carry-over from the old RSD name but it makes no odds which you have – the nerves are damaged in both cases and the treatments are the same

Lots of info’ online is so terribly out of date and therefore incorrect. Research in recent years has shed loads of light on CRPS and most websites do not have this latest info’. Many fellow patients are also not aware of the latest knowledge and (sadly) neither are many doctors.

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27. Something that has surprised me about living with an illness is:

How much you often become one of two extremes depending on people’s view –
I’m either…

a) not that ill really or
b) not really a person, irrelevant to the point of near invisibility

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pirates have no concept of ableism

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28. The nicest thing someone did for me when I wasn’t feeling well was:

This past couple of weeks the near-fainting has been so so bad I’ve even been missing my crucial paced physio’ time. On a day where I was spinny on the sofa Magic Dude turned up after work with pizzas.

At the Tai Chi nationals in June I competed even though I felt so awful. I concentrated so hard and sweat was pouring off me by the time I finished my handful of minutes. As soon as I could leave the performance area I collapsed. Magic Dude was on hand with a bag of salted peanuts, a bottle of water and a sweet drink. He is on standby when I get really symptomatic and he generally knows what to get for me depending on which symptoms are being particularly arsey!

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29. I’m involved with Invisible Illness Week because:

The concept of ‘disability’ in the UK is worse than ever since the welfare reforms and the posited concept of the disabled as scroungers. The number of attacks on the disabled has increased shockingly. I have been screamed at for parking legitimately in a disabled parking space and yet I have many a time gone home in tears because the disabled bays were taken by people with no badges and the screaming pain was so bad I had to turn round and drive home again and wait days (weeks in the pre-diagnosis years) for the pain to calm down enough for me to try again.

There is even an organisation pushing for a more active looking disability symbol but still only include a wheelchair user in that symbol. Only 7% of UK disabled use a wheelchair so no wonder concepts of disabled have been so skewed for so long, let alone the worsening effects of contemporary politics. So it is apparent that even some of us disabled folk are conditioned to think that the wheelchair is the most appropriate symbol for a group of people, when 97% don’t wheel about the place and therefore are often targeted for not looking disabled.

To work so hard to change a symbol which does not address the distressing effects experienced by 97% of disabled who are mistreated for not ‘looking’ disabled is hard to get my head around. It’s a nonsense.

We need change.

And we need to make it happen, because we have the informative inside view.

.accessibility

7% of UK disabled, 93% of disabled look nothing like this picture

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new NY disabled symbol

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7% of UK disabled may experience improved attitudes, but 93% of disabled look nothing like this picture

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A broader idea of disabled which includes the concept of non-wheelchair users and which could help to broaden understanding of disability and thus result in less aggressive behaviour towards the 93% non-wheelchair disabled when they legitimately use disability utilities, parking bays etc

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

Relieved that someone out there wants to learn more during Invisible Illness Week.
So many people don’t realise that many disabled and chronically ill don’t necessarily look unwell.

So… thank you xx

seal of approval

^ geddit? X-)

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I’ve just had a look at my post from last year and I’m intrigued, and pleased, to see the positive changes in my answers to 15 & 18. 🙂

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A note on pictures: I have found these wonderful pictures floating about being shared on social media. If one of these is yours I would love to attach an official source so that others can find your work, or if you would prefer your work not to be included please do let me know and I’ll remove it straight away, x

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.”
*ka-snort*
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

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WEGO Health Activist Nominations

Oh my, oh my, oh my, oh myyyyyyy! I’d been contacted by WEGO Health to let me know that I’ve been nominated for the Rookie of the Year Award a wee while ago, but today I opened up my emails to find several messages from WEGO about nominations for three other awards as well and I am currently still on a floaty cloud of happy surprise!

Thank-you lovely readers for being so kind as to nominate me for several awards for WEGO’s 2012 Health Activist Awards. I am totally blown away by your kindness and your ever wonderful and heart-warming support. I cannot find the words to describe being transported from a morning of tired slogging through my rather bland porridge (I think my tastebuds may have got used to me accidentally tipping far too much cinnamon on, my hands were less wobbly today and my tastebuds were rather sorry about that!) to “Wheeeeeeeee! Oh good grief! How blummin’ lovely are theeeeey?” *wibble*

I have now been informed that not only have you nominated me for 2012 Rookie of the Year, but also for 2012 Health Activist Hero, 2012 Unsung Hero and 2012 Hilarious Health Activist! Wow! I’m totally blown away! Thank-you so much, I am challenged to find the words to adequately express my feelings as I’m still in a state of happy surprise! (With my ANS it’ll take a while for the wibbles to settle down, too, so I may as well go with it and grin like an idiot for a few hours, eh?)!

I want to say to keep voting for your fave health activists online because there are some truly amazing people that I’ve met out here in the online ‘cloud’, but the voting closed on December the 31st and so now it’s over to the WEGO Health judges to get some mega-reading in. Lawks, they’re gonna be busy! There are some amazing bloggers out there and I salute them all. I’ve met wonderful fellow bloggers and fellow patients since starting this blog and there are no words to adequately express the strength, love and beauty that is apparent in your words and actions online. I am honoured to be counted among you and I adore the support and sharing online that helps so very many patients living with a massive variety of health conditions. Each and every individual doing this makes a positive difference and has priceless value because of it, xxx

2012 WEGO Nominations