30 Day Chronic Illness Challenge: Day 9

Day 9: Have you ever tried any alternative therapies, if so what? Did they work?

No, I haven't. The only non-medication relief I have is a rigorous exercise routine.

That isn't to say I'm completely dismissive of alternative therapy though. It's more than possible that no particular one has quite been "sold" in the right way for me yet. I've always believed very strongly in the idea that if something works for you then it shouldn't be the province of others to criticise it. I'm a firm advocate of "each to their own".

Now before I make the next comment, I do want to add the caveat that I think for the most part the chronic illness tags on all the websites I use are fantastic. They offer a sense of community and act as a hub of support and advice.

However, they really do wind me up when they descend into a "what did you post that suggestion for, it doesn't work for me therefore it's stupid?"

Everyone is different. Everyone with the same condition is still different. It's actually one of the things that has so far kept me from doing one of my traditional longer posts about my exercise routine - I know how unpopular an idea it can be. It's in the list of things I have to work on after the end of this challenge and I will put it together eventually.

There seems to be a reluctance to think a little bit outside of our own personal box in terms of treatment - if nobody ever tried anything new, how do you think treatments would be established? Also, expecting a one-size-fits-all answer is somewhat foolish - if we had one, we'd all be cured by now wouldn't we?

I don't subscribe to the idea that treatment is static - in my mind it's a fluid and progressive process built on finding new methods and trying new things under guidance. Just because I haven't found an alternative therapy which has piqued my interest doesn't discredit the many people who have found them beneficial, and neither does it mean I won't possibly find one in the future.

Finally in summary, because it seems to be the one I'm most frequently asked about, I'm just not bendy enough for yoga. Important limbs are likely to snap and come off if I try most of it....

(Nope, I'm sorry but nothing in the world will convince me my legs will ever do that. 

Courtesy of kyrinhall.com)

30 Day Chronic Illness Challenge: Days 7 and 8

(I was back at home in Sheffield for the weekend, hence the double-up for the day I missed!)

Day 7: What was the biggest realisation you've had?

This was a two-fold realisation I think - firstly it was the discovery that nobody can truly understand the nature of a chronic pain condition unless they are experiencing it themselves and that it isn't my fault for poor explanation or not quite being able to articulate it in a way from which an epiphany could spring.

Secondly and I think more importantly it was that this is, in fact, not always a big problem. As long as I can make the people who need to understand do so - and I really have adopted a "take no crap" approach to that - I'm fairly accepting of the fact most people can't really understand.

Providing nobody outright tries to accuse me of lying, or tries to assert that they know better than I do about my own body then I really don't mind most of the time. I'm almost uncharacteristically assertive with those who are on the "need to know" list - my work, for example - but otherwise I revert to type as a very un-showy individual and actually don't really want that many people to know and understand in depth and detail what's happening in my weird and wonderful body and brain.

Unless of course either does something which has colossal comedy value - then I think that's fair game to share. I find laughing at my chronic quirks soothing and helpful, and the gift of laughter should be shared as much as possible in my view.

And if I ever particularly need attention brought my way (illness-wise or not), shouting "I've got a plan and it's as hot as my pants!" will usually do the trick!

(Blackadder references - both brilliant and necessary.

Image courtesy of www.disgracejones.com)

Day 8: Where do you see yourself in five years time?

I really do despise these sorts of questions. 

Most of the reason is that I really don't know. I achieved one of my main wishes this year in moving in with my partner in York, so I suppose I've rested on my laurels a bit since then. It's hard to make this entirely illness specific as well, as is often said incurable ill health does touch on and entwine with all aspects of your life. 

I'd like to be in a job where I'm happy enough and with enough leniency in key areas to allow my health to remain at optimum level (which has not been happening recently) - having this stress reduced is a very big priority as I am determined to hold down a full time job. It's a very large point on which I am not prepared to budge unless my health were to get significantly worse to the point where it would be unfeasible. To have an environment conducive to good mental and physical health and still be in a job which I find intellectually challenging sounds like a large ask, but I don't think it's impossible to achieve. 

One of my other long term ambitions is to take on a big walking challenge for a Fibromyalgia charity. Not everyone is physically capable of undertakings such as this in the name of the charities they hold most dear - that's the nature of chronic illness - but if planned and trained for carefully I believe I can do it. I've also always been one of those people who feels that those who can essentially should. I've looked into the Yorkshire Three Peaks and also into a 26 mile walk over the border from my native Sheffield in Derbyshire in countryside I am familiar with as I spent much of my childhood and adolescence exploring the wonderful Peak District. I am in no position to do so this year and probably not next year - training up for something of this nature would be a huge long term undertaking, and has to be preceded by what I've previously mentioned in terms of getting settled into healthy and challenging full time work. 

So, there you have it. In some ways I have never been a person who is content to dream small. 

And speaking of dreaming big, after 77 years we have a British Men's Singles Wimbledon champion. I'm not a huge tennis fan but I can always get behind a British champion of any sport. I will round up my thoughts for today with saying well played and well done to Andy Murray.

(Well deserved and a long time coming. Image from Tumblr, source unknown.)

30 Day Chronic Illness Challenge: Day 6

Day 6: If you could have told yourself something when you first remember these symptoms arising, what would you have said?

I could sit here all day listing small things, but I think there are two major things I would have said.

Firstly, trust your gut (pardon the pun) instinct and stick to your guns. I wish I'd ventured into the world of chronic illness blogs and forums several months earlier - it would have armed me better for dealing with the medical profession and the general reluctance within it to accept anything that can't be fixed with one visit and one prescription.

Had I done so I think I would have had quite a bit more courage early on in standing my ground - I would have asked to be referred onwards rather than waiting for it to be mentioned, and I would have been far more assertive overall instead of allowing uninterested GPs to half convince me it was all in my head.

I have a very appropriate mug for this particular point:

(From Cafepress - I couldn't resist it!)

The second thing is more of a general life lesson but the learning came about during the diagnosis process. It's hard to explain without being terribly long winded, but a friend's saying of "You only want on your team the people who want to bat for your team" sums it up best I think.

In essence I suppose it's listening to the right people and disregarding the opinions of the wrong ones. I had several incredibly toxic "friendships" around me during the first year or so of being ill, and it took me a long time to wake up and smell the coffee in seeing them for what they were - damaging and unhealthy - and making the move to be rid of them.

Looking back with hindsight at all the hurt and general upset caused, I would honestly tell my old self to toughen up a bit and stop trying to make life easier for other people by tolerating people I don't want to tolerate. Even when I knew in the back of my mind that continuing on the path with some of those people was in fact affecting my health, I kept on so as not to upset the apple cart for others. I think it comes down to again trusting myself and my instincts a little more - I do have quite a knack for getting a bad gut feeling on first meeting someone which is inexplicable at the time but generally will come to light later. 

Essentially, I think I'm a nice person. I don't like upsetting others or inciting confrontation. However, being ill has moved my boundaries and taught me new ones - it has shown me what I can't put up with and have no reason to attempt to do so. I've said before that in some ways I'm grateful for the effect on my life. I'm sure I'd have reached the same conclusions eventually,  but I think sooner rather than later is definitely preferable. 

Have I learned the lesson completely? No, but then life is all about learning and nothing worth having comes to you overnight. 

30 Day Chronic Illness Challenge: Day 5

Day 5: How does being chronically ill make you feel?

I'll share a secret - I've been positively dreading a question like this one.

Frustration is probably the word which best encapsulates the well of new emotion in the wake of becoming ill. No matter how much work you put into positive thinking and moving forwards I don't think you can (or should) avoid the occasional rant or cry. It's human and it's healthy.

It's also particularly reasonable. Who wouldn't be frustrated with new limitations, new boundaries and new impossibilities which they certainly did not ask for?

(Thanks, but I'm sure I'll find it.)

For my own sake I refuse to think in terms of "might have beens". My life reached a fork in the road and fate or an almighty power or whichever idea you subscribe to intervened and I've been on my new path ever since. Sure, I'd love to have stayed on the healthy one, but I'm one of those irritatingly zen people who tends towards thinking things happen for a reason. One door closes and another opens, or so I like to think.

I certainly have my low moments or days when I want to jump up and down and shout that it's not fair - I'm not a saint, I'm a flawed human being just like everyone else. Some days I really do feel like a wide open vista stretching from horizon to horizon has been irrevocably narrowed, but it's wisest I find to have the necessary vent and then to put it to bed.

Anger and upset are normal and indeed necessary, but when you have a chronic pain condition bound inextricably with your mood which responds somewhat violently to tension and upset, it's a good idea to learn to temper things a little. For myself I tend to turn anger into resolve and a "you won't beat me" attitude. I'm starting to be absurdly grateful to the friend who named my inner health demon "Petunia" - it's wonderful having a name to direct my righteous anger at. If nothing else I can at least regress to being ten and call her names, which is surprisingly satisfying.

I'm not a person who likes to cry for my own situation, but I found it was better for me to just accept when I need to (more often than before though it is) and to keep going forwards afterwards. I had to train myself to not think of each bout of upset as a failure, which I had a tendency to do before.

Don't ever let anyone tell you being a perfectionist is fun. It's not. It's demanding and wearisome at times.

One thing I came to realise recently was that I don't respond well to being told I'm "inspiring". It's a lovely thing to say to someone, but I think deep down I'd much rather be a "normal" healthy individual than an "inspiring" ill one. Inspiring feels like a mantle I have to live up to, even on bad days. I'm well aware that's probably a quirk of my personality though.

"Everything happens for a reason" - but I'd rather like to be on the board the next time a big decision is made.

That's a wish unlikely to be granted though, so I'll just go back to being the Dragonborn in Skyrim instead. A majority share in the entire universe, servant of multiple Daedric princes, Archmage of the College of Winterhold, Listener of the Dark Brotherhood and general all around pain in the backside.

(Skyrim - vicarious horse riding and ass kicking all in one Shadowmere sized package.
Image courtesy of comicbookresources.com)

30 Day Chronic Illness Challenge: Day 4

Day 4: How have your friends and family reacted to it?

Honestly? I've been extraordinarily blessed.

Yes, there have been negative experiences but this illustrates the mistake I made and I've seen many others make - anyone who would cast you aside over an unavoidable health problem is not a "friend", so let's stop dignifying them.

They have no place here.

My family shared all of my frustration - they worried with me about time off work, ranted with me when I'd yet again come up against an obstructive doctor, and held my hand when I just needed to cry. More importantly than that they reassured me that it was in fact perfectly acceptable to cry. It still makes me cringe thinking about how many days of work my self-employed Dad lost through that first year.


Dad was living with me so saw the best and worst of all of it, and I am very grateful for his patience and forbearance even when I was undoubtedly being a pain in the neck.

My Mum has been there in spirit all the time, although living in a different city caused its problems. She has an astounding ability to say the right thing at the right moment and puts up with all my ups and downs.

My partner is a hero. Because he sees it all - all the different facets and all the punishing trial and error, all the times I don't know where to go next or what to do - and never flinches. And I'll be the first to admit I am not the nicest of individuals when being in pain and lack of sleep combine. Hell hath no fury like a lady who's fed up.

(On a recent reconnaissance mission to scout the "outside" - posing as a wedding, naturally.) 

"Immeasurably blessed" was not an overstatement. My friends are incredible - whether it's talking about the problems, accepting I don't want to talk about them, asking the right questions and not asking the wrong ones or just purely being there if and when needed, they are a treasure utterly invaluable.

One of the huge positives of my situation - and I am aware that seems an odd thing to say - is the friends I've actually made as a direct result of being ill. Some I already knew as acquaintances and the friendship developed through the common ground of ill health. Fellow bloggers Jenny and Shane are two such examples - and I'd ask anyone who has taken the time to read this to have a look at their blogs too. There are more and I'm grateful for each and every one. Through writing this blog I am constantly coming into contact with new people and it's been a very uplifting and cathartic experience.

To finish - you'll no doubt have noticed the talk of Bloodstock Open Air in So Say We All? Well, one of said friends and I have a pact to fight (or maybe enlist help!) our way to the front on the Saturday evening for Avantasia's first UK appearance.

(Challenge accepted.

Image courtesy of powermetal.cl)

Because the best companions are the ones who join you in hair-brained schemes.

30 Day Chronic Illness Challenge Day 3

Day 3: How did you get a diagnosis?

Apologies for a late addition today! I have in fitting fashion been, as a friend of mine rather aptly terms it, "flaring all over the show".

(Diagnoses are a little like dragons to me - elusive, a little mythical but probably hiding somewhere. You're judging me, I can tell. Stop it.
My favourite of the D&D dragons, the Lawful Good Silver. Courtesy of draconika.com)

In my case as previous readers are aware this is in fact "diagnoses". They happened quite separately and in entirely different circumstances. I'll start with the Interstitial Cystitis as it is by far the simpler of the two.

I mentioned in a previous post my time spent under Gastroenterology, and during this time I had a fair few visits to hospital and in routine tests I kept showing up with an apparent water infection. Having had a run of actual ones in the previous couple of years I was a little skeptical - I'd describe the symptoms as similar but with enough difference that the sweeping ten second diagnoses were starting to pray on my mind. It took five courses of antibiotics doing not a damn thing for a previously unseen doctor at my hospital's GUM clinic (I'd long since given up hope with my GP of the time) to raise an eyebrow and write me a referral to Urology.

Which my then GP surgery promptly lost. Now I don't swear habitually, but I think I probably swore more in that moment than I had for the rest of the year up to that point put together. I was not a happy lady.

This prompted a very successful change of doctors surgery to a newer once which opened locally. I find it somewhat amusing looking back at how I approached my first appointment. I probably resembled a tightly coiled spring and was ready to bite at the slightest provocation.

My new GP gave me absolutely no provocation whatsoever. He listened to me recount the symptoms and talk about the lost referral, drew up a new referral request on the spot accompanied by words to the effect of "this nonsense has gone on long enough" and as I left feeling a little foolish he said something so utterly out of character from my experience with doctors thus far that it virtually floored me:

"Don't worry, we'll find out what's wrong with you. You're not going mad. Keep your chin up."

Two months later I went for an initial appointment with Urology, who diagnosed me with Interstitial Cystitis based on symptoms alone in under five minutes. A cystoscopy was considered for absolute confirmation but as I'd just recovered from a run of three internal cameras (all of which had caused problems in the aftermath) it was decided to my lasting gratitude that I didn't need anything else put in places it probably shouldn't go. Also, the rather frank and earthy description given of the aftermath of a cystoscopy rings with me to this day:

"Fair warning, it's like pissing glass for a week."

Remembering that discretion is the better part of valour I beat a hasty retreat.

(Baldur's Gate's Minsc on retreat - "There is no shame in returning another day with bigger swords!" - a nugget of rare wisdom found in the midst of screaming "Go for the eyes Boo!" at every opportunity.

Image courtesy of mmo-champion.com)

Diagnosing the Fibromyalgia which is by far the greater of the two in terms of effect was somewhat more long winded. I don't think this was anyone's fault really as it took a long time for the muscle and joint problems to be looked at in a separate light to the bowel issues. Once that decision was made (again under the new doctors surgery) then a long haul of tests began.

As my Dad has Rheumatoid Arthritis this was first on the list to be checked for. No inflammation markers at all, so onward!

Lupus? Really? But that's a joke on Hou- apologies doc, I'm sure you've heard this one already.

After the round of Lupus antibody tests came back clear along with several others (having five vials of blood taken made me seriously wonder if they were secretly farming it...) my GP seemed a little lost on returning for my next visit. In doing a general search for information on chronic pain she stumbled upon the tender point test which I'm sure fellow Fibromyalgia patients are probably familiar with. My understanding is that a definitive diagnosis is reached if a patient reacts to pain in at least 11 of the 19.

I forget how many the GP had tried when she had to pick me back up having fallen over and curled up in a ball until the pain subsided. She put a negligible amount of pressure on each point with two fingers, and the only description which comes close is like having white-hot fire pushed through the skin and into the muscles and tissue underneath.

Let's just say I never want to repeat the process. However I'm hugely grateful to that second surgery, as I firmly believe I'd be lost in the diagnosis loop to this day if they hadn't stepped forward and been prepared to think outside the box.

Sometimes a fresh pair of eyes and innovative thinking can be beneficial beyond words.

30 Day Chronic Illness Challenge: Day 2

Day 2: How have these illnesses affected your life?

You’d assume this would be an easy question to answer, but it turned out to be somewhat difficult.

I think the simplest difference to explain was that prior to falling ill I was in the habit of tearing about at top speed doing anything and everything with little thought to consequence – a good night’s sleep would fix everything, right?

Now I have to plan carefully, allowing for day to day fluctuation, proximity of activity to other planned outings, weather and other factors. Nothing can be undertaken lightly any more. On the worst days I struggle to do even simple day to day tasks as the pain and fatigue become overwhelming. Thankfully I seem to be having less of these since I moved up to York to lose my weekend round trip of 130 miles to see my partner.  

Like many other people I’ve spoken to my social circles underwent some dramatic changes. For whatever reason not everyone wants to stick by the chronically ill – I’ve moved well beyond the point of wasting my time being angry about it. Instead I choose to focus on the amazing people who either stayed by me or stepped to the fore and became fast friends. It’s hard to feel negative about the changes when faced with such overwhelming reasons for positivity.

I think by far the hardest thing for me to accept was the dramatic effect on the things I loved to do with my spare time. I finally had to give up my long-held hope of ever returning to horse riding as there isn’t a chance of my being able to handle something so high-impact, and one fall could do tremendous damage long term. My creativity is not being wholly satisfied as my hands don’t allow for long periods of work (I’m a sketcher primarily) and a lot of the time I cannot summon the requisite levels of concentration. I had planned to create a Dungeons and Dragons inspired triptych (I can see you judging, desist at once!) for our flat but I haven’t even been able to begin yet. One day!

(A previous sketching effort - Sonata Arctica fans may recognise an attempt at the Reckoning Night cover.)

 

I am however tremendously lucky in a lot of ways in that I’m still managing to work and have a social life, albeit different to before. I was never a big drinker but now cannot drink at all – alcohol has even started to smell “wrong” to me after being sober for 18 months.

 

I can still exercise (in fact that’s the only reliable pain control I’ve found thus far) which is a blessing – I led a very active youth and I’m well aware I would be driven crazy by inactivity. However, having to exercise to avoid future pain has sucked the joy out of it for me, but my partner and I are about to start going to jive classes and that will give me something to do purely for fun again.  

 

Also, it has given me the opportunity to write this blog which is both cathartic, an excuse to be somewhat creative and a chance to meet and talk to other Spoonies. Whilst I started the blog in the hope of being able to help others I’ve actually grown quite attached to it for my own reasons also.  

So in summary I would say whilst the effect has been profound, it could be a lot worse and I'm very grateful for small mercies.