Eye of newt and toe of frog...

I thought I’d write a post about some of the supplements I’ve been trying – despite the title I promise I’m not doing dubious things with bits of animals, my thumbs aren’t pricking and none of it will make three hags on a moor scream “Thou shalt be King hereafter” either. It’s just the passage which wandered into my head on thinking about this.

I admit it; I was one of those strange children who actually enjoyed Shakespeare when I was at school.

Whilst you’re all digesting with horror the concept of just how little street cred I ever had, onward with no more ado!

(Me at school. Little has changed.
Gif courtesy of Buzzfeed.com)

Multivitamins

I like so many others before me roll my eyes continually at the idea that taking a one-a-day multivitamin will solve all chronic health woes. I find I am incapable of dealing with that level of stupid, so I tend not to say anything any more. I don’t get angry and the stupid person lives to be erroneous another day. Everyone wins except their next victim.

However, it’s one of the few cheaper options in terms of things which may provide a little relief, and even the smallest signs of improvement are a big boost. A GP or a quick bit of internet research should reveal what vitamins and minerals are particularly key for whatever your condition may be – for Fibromyalgia it’s the B vitamins and particularly B12. Fish oil is a pretty solid option too.

So I’ve been taking a multivitamin with all the complex Bs in it along with magnesium (also a good bet) and a fish oil capsule once a day. I’ve been doing so for about six months now, and whilst there’s no huge difference I do seem to be feeling a bit brighter most of the time. This might be psychological, but I’ll take the improvement whether it’s real or not.

Some other options for Fibromyalgia I haven’t tracked down or tried yet include brown seaweed extract, Ribose (a type of simple sugar) and SAMe (S-Adenosyl methionine) a compound which supports immune function.

Fibre Supplements and Probiotics

What’s that I hear? Groaning because I mentioned the f word?

Fibre is my favourite argument to have with GPs. As regular readers will be aware my problems first arose in the form of wacky bowel function. After much time and effort and rather too many cameras in dubious places I hit the Wall of IBS.

What’s this Wall? Seemingly hundreds of bricks repeating “Just eat more fibre!”

Working on the assumption that I did indeed have IBS (I don’t think I do, just for clarity’s sake) I was prescribed Fybogel powder drinks and an anti-spasm medication called Mebeverine. The Fybogel was orange flavoured, the packet claimed. I very quickly started referring to the horrible stuff as “Chernobyl Orange”, because it looked radioactive and tasted awful. Next came a Fybogel drink which had Mebeverine in it to save taking the tablet. This was not an improvement in the slightest and quickly became “Fizzy Chernobyl Orange”.

Aside from giving my inner child the opportunity to think up silly names neither option did anything at all. Probably because I eat a pretty good diet in terms of daily fibre intake as it is, and the pain wasn’t spasms in the first place.

("Fizzy Chernobyl Orange")

The next thing I tried (anything to get away from Fybogel) was a vegetable fibre supplement called Life Plan which is available in most larger chemists and comes (hurrah!) in tablet form. It contains three different strains of fibre the body needs and is mostly vegetable matter in composition.

Never, ever again.

The problem with this heavy fibre approach is my body just doesn’t like it. I don’t care how many times it’s been pointed out that on paper this is the correct answer. Seemingly injecting more fibre into my diet just causes utter havoc.

This fact was what sent me off on a different route. It might appear on the surface that I have symptoms of low fibre intake, but that’s certainly not the case with my diet or indeed does it appear to be the source of the problem. Normal rules just don’t seem to apply and so I started to investigate the area of food intolerance, having had a particular brand of test recommended by a friend. This is definitely something I intend to do once money allows it in the future.

Another friend mentioned having started on a probiotic and it helped to clear up their health issues, so I thought this had to be worth a go since I had a first hand account of its usefulness. The one I’ve been taking is called Acidophilus and recommends 1 or 2 of the 100mg capsules a day with a meal.

The problem certainly isn’t fixed, but it does seem to have calmed down somewhat. I’m definitely getting less of the swinging wildly from one end of the spectrum to the other and float a bit more around the middle, and certainly I’m much closer to normal function than I have been in a couple of years.

The one slight problem with all of this? Our old friend Fibro Fog. This relies on me remembering to take them, which isn’t such a given any more. At the moment I’m experimenting with where I leave them, trying to make sure that they’re somewhere conveniently in eye line whilst I’m cooking so I remember to grab them when I eat. This works reasonably well, providing I remember to move them there in the first place.

Oh what a noble mind is here o’er- I’ll stop it, I promise.

Is anybody else taking any supplements or similar things? Are you finding them helpful?

Wishing you all many spoons xx

30 Day Chronic Illness Challenge: The End is Nigh!

Day 28: Name five things you have achieved despite your illness.

1. Holding down a job

I'm on short term temporary assignments at the moment, but touch wood chronic illness has not led to my being unable to work. It's something I am not prepared to part ways with unless absolutely necessary, as having a job for me is an incredibly strong link to "normality" as it were. It isn't always easy, my sickness record is far from perfect but luckily I've worked in some very understanding companies thus far. Long may it continue.

2. Making it to important occasions

I've had three weddings this year with a fourth coming up. The law of probability would suggest I was bound to have a flare up for one of them, but this has not been the case. I sincerely hope this hasn't jinxed the fourth one in just under three weeks time! I've certainly been worse for wear after all of them and needed a lot of rest, but it has been such a lifter to me to get there for each one.

3. Remaining active

I might not be as vigorously active as I was and the exercise certainly has changed in method, but I've been really pleased that I've been able to keep some of the momentum going. Pilates really helps against the deep seated aching and morning stiffness, and I am incredibly grumpy on days when I have to give in and accept that it wouldn't be a good idea to make the attempt. Mostly I try to do at least a part of the workout every day, except for the one week a month when dysmennorhea makes it impossible.

4. Writing the blog

Blogging in such a focused way wasn't something I'd ever tried before and I had my doubts as to how long I'd be able to keep up momentum and find interesting content to write about. Thus far though it's been a far more natural process than I expected - I've never really had to force it or struggle for content - and I've thoroughly enjoyed both the writing and the discussion it provokes.

5. Grim determination

There are days, and I'm sure we all have them, where I just want to go back to bed and give up because it all feels too damned difficult. I've never actually let myself yet. I'm not sure where all this willpower has come from (I suspect it was always there and just needed a bit of a focus) but I'm certainly not complaining.


Day 29: What has helped you cope with the stress of the situation?

I'm blessed with a really strong support network around me and their presence actually tends to lead to me asking for help less. That sounds odd, but the knowledge the help is there should you need it is a great comfort in itself. Mostly though, it's an unwillingness to give in and be overwhelmed purely because of the flare up I know is waiting around the corner of that particular road. Stress, worry and anxiety are not kind of conditions like Fibromyalgia.

That isn't to say I never lose my temper any more and that I never worry about anything or get upset - of course I do - I just try to keep a very firm hand on it. I've learnt over time to be quite in tune with what I need to do to alleviate stress and I make quite a conscious effort to switch off and do some of those things until I feel better.

Usually it's escaping for a while with a book - now that was a surprise to you all wasn't it?

Another big aid for me is the involvement I have with the wider chronic illness community. Having people with the same experiences to talk to and bounce off is both a comfort and a pleasure.

(My idea of heaven - image from jebbie74.wordpress.com)

Day 30: Finally, starting at your toes and working up, name each part of your body and how your illness has affected it, followed by something you like about that part of your body.

Am I allowed to just get away with "Everything hurts and is a bit broken but all will be well?"

Generally speaking, all of me hurts and gets stiff and unhappy. My knees, hips and shoulders get particularly grumpy. However, I do like my body a lot more than I ever did before. I spent too much time as a teenager (like many of us) caring about what I looked like, or possibly more what other people thought of what I looked like. Now I'm just appreciative of all the things my body can do despite the fact my immune system is attacking it. I really appreciate its strength and flexibility, and as an aside with all this exercise I'm in the best shape I think I've ever been in. I'm not sure why becoming ill was such a trigger for losing the superficial worries but I'm grateful for it.


That's it folks! Challenge over. What did you think of it? I'm considering writing a new one for next year to try and iron out these repeats, and I'd love some feedback or suggestions for alternative questions - the more the merrier!

Wishing you all many spoons.

30 Day Chronic Illness Challenge: Day 27

Day 27: What's the best piece of advice have had?

Don't be afraid to ask for the help you need.

I'm by nature both independent and stubborn - I don't *lie* needing help, or indeed asking for it. Firmly in character I spent the first few months not really knowing what to do, pushing myself too far because I didn't want to admit I needed support and then naturally making the whole situation worse as a result.

Slowly over time the thought occurred to me that nobody gets hurt if I ask for help. Nobody has to sacrifice limbs or fall on their sword, least of all me.

In fact all that happened generally was that the people I started to go to were relieved I was finally asking, and I was saved from the cycle of over-doing I'd brought on myself.

Being completely honesty, I still don't like it. Wise move or not, the necessity sticks in my throat quite a bit. This probably isn't helped by the unpredictability - to go from a couple of days of being able to do everything to suddenly needing help with the simplest of tasks again really makes me grind my teeth.

Today is one of those days. I woke up feeling quite active but this went down the pan after a couple of hours. As such the ironing will just have to wait and I've done very little beside empty the dishwasher and open the windows. Yes, opening the windows was about the extent of my capabilities. Fate, I find your sense of humour most distasteful.

So, I'm taking a leaf out of my cat's book and settling down for a snooze, and whilst awake getting reacquainted with an old friend of mine - it's been years since I re-read the Harry Potter books, and they're nice for when I want to take my brain out of gear.

(They say pets resemble their owners...)

30 Day Chronic Illness Challenge: Day 25 and 26

Day 25: Name five activities you have managed to pursue whilst being ill, and five activities you may not have done had you not been ill.

I'm only doing three instead of five, as it's becoming increasingly difficult to not repeat myself. 

1. Reading

I'm aware from other people with similar conditions that they run into problems reading - the words move about, they can't focus and concentrate or it brings on headaches and the like. I couldn't be more grateful for the fact that this doesn't happen to me (touch wood).

I know myself well enough to recognise the fact I would go absolutely crazy if I couldn't retreat into a book whenever I needed to. There's nothing I love more in this world than a good book.


2. Pilates

I'm lucky in that eighty percent of the time I manage to at least do a little bit of the workout I use. I struck gold in finding a workout that isn't just pure Pilates and incorporates a little bit from several other disciplines - stretches from a particular form of yoga (I forget which) and some moves from classical dance training. Through a mixture of grim determination and no small amount of pig-headed stubbornness I've kept going with it and if anything my overall flexibility is better now than it ever has been. The downside is I do find I have to do it as close to every day as possible to keep that flexibility and low pain level, but it's a small price to pay for comfort.


3. Day tripping

I can't do this very often any more, and nowhere near as much as I would like, but through careful planning I have managed a few trips since falling ill. The most recent excursion was to Chester to see friends, but also to tick off both my biggest loves: animals and in my own words "things that are a few thousand years old and have fallen over". I really recommend both the city itself and Chester Zoo. The partner in crime and I also managed days at Warwick Castle and Thorpe Perrow Arboretum in North Yorkshire. I miss the ability to wake up on a nice weekend and just throw things in the car and head off, but being able to do some things is always better than nothing.

(Roman Gardens, Chester.)

Day 26: What impact has this had on your friends, family, partner, parents etc?

I'm going to refer back to Day 4 as I've inadvertently answered this already:

30 Day Chronic Illness Challenge: Day 4

30 Day Chronic Illness Challenge: Day 23 and 24

Day 23: What do you say to yourself when you need a pep talk?

It could be a good deal worse.

I know, I'm committing a terrible act of cliche. However if it isn't broken, don't fix it.

There I go again.

Quite honestly though it's a mixture of that and quietly thinking about everything I either have managed to do or know I can do in the future. If we present the coin of chronic illness, I believe either outlook of looking at what can be done or thinking about what can't be done are very much the two sides.

Also as regular readers will no doubt have noticed, I tend to find something in the situation to laugh at. Getting simple words mixed up, misplacement and loss of things which were in your hand all the time, random physical quirks and every other colourful part of my conditions are at the same time somewhat depressing and downright hilarious. It's to my mind at least a matter of where you choose to focus - laughter is healthier for me so I lean towards it. That isn't to say I don't have low moods or bad days - of course I do - but for the most part I try and make the decision a conscious one.

I remember a teacher once telling me that the way you respond to the question "how are you?" can actually affect your overall mood. If you say "not great" then you'll feel somewhat downcast afterwards. "Okay", "pretty decent" and such are better, but if you make the transition to saying "good" or "great" then you'll feel better.

That isn't to say I lie on a bad day - I don't believe there'd be a great deal of point to that approach - but it's something I do try to keep in mind. Whether it works because the observation is a true one or because I expected it to work after hearing about it, I'm not overly concerned. The fact it does work is good enough for me.

(The only option yielded by a "smile" search in Google which wasn't at least a little vomit-inducing. The things I do for you, lovely readers!)

Day 24: How have you managed to juggle your social life through your illness?

Through the good fortune of having extremely understanding friends.

When I decided to cease bothering with alcohol to see if it would calm bowel issues down a bit - this was before having any inclination about my Interstitial Cystitis - I met with a couple of people who delivered the "YOU DON'T DRINK??!" exclaim of surprise with rather the same manner I'd have expected if I'd announced I'd discovered the meaning of life.

Now everyone's choices are their own and I appreciate it was much easier to give alcohol up coming from a place of never really having caught the "bug" if you will. I'm generally not a terribly judgmental person by nature, but the people who seemed to equate giving up drinking with loss of a limb really make me believe they need to take a good long look at themselves.

That thought aside, my friends were incredibly understanding that as a sober person there comes a time in any night when everyone else is too drunk for you to still be sober and I'll take my leave. I'm absurdly grateful in the face of all that ridiculous shock for the way this was just accepted and not even once thought to be a problem.

I'm lucky in that I am no longer surrounded by people who read an ulterior motive into my sudden cancellation of a get together, or those who think the correct way to respond to my being too ill to meet them is to make snide comments about their own comparative importance in my eyes. I've said it before and I'll say it times many again no doubt.

You don't need to tolerate people like that. If they can be shown the error of their outlook, then educate them. If they can't, don't waste valuable spoons on fruitless endeavour. Give your time to the people who deserve it.

Rainmaker

"You tell me we can start the rain

You tell me that we all can change

You tell me we can find something to wash the tears away."

Rainmaker - Iron Maiden

I did something today which sounds small, but as a gesture towards the well being of the inside of my head I think it was deceptively momentous. 

I threw out all the clothes which no longer fit me or aren't comfortable post developing my array of chronic quirks. For the most part this means I've turned my back on jeans and given up on trying to fit into everything I used to wear with ease to just to try and prove a point to myself.

I know, it sounds like nothing more than a part of a normal spring clean. I just realised part way through that this was me finally letting go of my old body. Whilst I've moved forward in my thinking with my limitations, my dietary issues, the aches and pains and all the other symptoms themselves, I hadn't until now quite moved ahead with how I felt about the changes to my body.

Filling that bag was piece by piece putting all the worry, anger and upset away and affirming that I don't need it any more. Subconsciously I suspect I'd been clinging to the hope that somehow I'd wake up one day and my shape would have returned to what it once was, which was as foolish as it was unhelpful.

I've said on numerous occasions my only consistent pain relief is exercise. Now, when your diet doesn't change or maybe even cleans up a little and the amount of exercise you do increases, one of two things happen. You lose weight, or you build muscle. I've never carried very much in the way of excess weight so this left me with only the latter option.

The beginnings of a visible six pack? That I can live with and some days I'm even slightly proud of it. And to be honest with some thought, once the initial "Oh good lord, more leg muscle means bigger thighs" anxiety passed, there's nothing to be ashamed of in legs with a bit more shape to them - even when unplanned.

It occurred to me that fighting with very close fitting garments when you possess an alarming tendency for bloating was only ever going to be a losing battle and only served to be a stick I could continually beat myself with.

Well, said stick has been made into kindling for me to burn at my leisure.

The reality is whilst it's the only thing that works I cannot afford to let up on the exercise, and given that my body adjusts I seem to gradually need to do more of it to achieve the same effect. Given that these changes are only going to continue and it's about time I commanded the reins of the chariot of my confidence and swapped the horse of positive self image into the right hand harness.

So I don't look like I used to. Why does this have to be a wholly negative scenario? It doesn't, but for some reason I'd let myself believe it did. If you use the internet with any regularity you'll no doubt have seen plenty of body positivity messages about loving yourself flaws and all - as with many things it turns out it's an ever changing learning curve. Just because something changes doesn't mean you can't like the new as much as you did the old.

This seems a little wide of the mark in terms of relating to illness, but I assure you there's a purpose here. I've always believed your mental well being is one of the most important aspects in allowing you to find how to cope with chronic illness and all the challenges it brings. Allowing myself to keep raking over the same ground with my self image let the thought become insidious, and it started to have wider reaching effects on my overall outlook.

What brought all this introspection and new resolve on, you ask? I bought myself an Iron Maiden dress. Reading the measurements I realised the changes would actually make it a better fit rather than a more difficult one.

(The rather lovely handiwork of kittyvampdesigns on Etsy.)

When you find a lovely dress you can't help but fall in love with and unintentional muscle development will make it look nicer than it may have done previously, there are only two things you can do.

Accept and embrace the changes, and buy the dress just as fast as possible.


Has anyone else had issues with self confidence and self image as a result of their chronic ill health? How did you overcome it?

Wishing you all many spoons xx

30 Day Chronic Illness Challenge: Day 20, 21 and 22

Apologies for the blip in regular posting! Should be back on track as normal now. 

Day 20: Have you met anyone with the same illness? Did it help?

Yes! I've met some lovely people (mostly through the internet) who have either Fibromyalgia or IC and their support is a wonderful thing. Often it's not direct, it's just about their presence and knowing that there are people out there within reach who need no explanation of what you're going through - they get it. I've said before that other ill people in general are good people to know without sharing the same condition necessarily - there tends to be a level of understanding regardless of the specifics. I do genuinely feel quite blessed in this regard.

To give an example of why this is important, I spoke to a new recruitment agency on Friday and booked a meeting for next week. On approaching the conversation "I was diagnosed with Fibromyalgia..." I was pleasantly surprised to hear in return "Don't worry, one of our consultants has it so you don't need to explain yourself. Do you need to work somewhere which has a lift?"

Completely unexpected and really quite wonderful!

(My old horse riding tutor used to say this all the time - whilst it's fine in theory it didn't stop me wanting to slap him each and every time. It's rather like saying "expect to suddenly involuntarily leave the saddle!" Image from www.123rf.com)

Day 21: What networks or websites have you used for support and information about your illness?

Originally I stuck almost exclusively to medical websites, mostly Patient.co.uk to try to get a feeling for the mass of symptoms associated with FM in particular and just for reassurance I wasn't going mad. I'm sure we've all considered that option at least once!

I was already a Tumblr user and soon discovered that the Fibromyalgia, IC and indeed chronic illness tags were full of people willing to share their experiences and offer any help they could. This progressed into finding forums and eventually Facebook groups.

I've listed the ones I settled with and think are the cream of the crop in The Warrens tab. I find the Facebook groups are particularly good as people tend to be very friendly and open in answering questions on just about anything, and idiocy and nastiness just aren't tolerated. Mostly though, it's lovely to log in on any given day and find my dashboard full of inspirational pictures, thoughts and words. An easy and inexpensive way to start the day well!


Day 22: How do you feel you have been treated by the medical system? Explain.

Whilst I definitely had my share of frustrations with the medical system, I think generally I was treated quite well. I was initially treated under Gastroenterology which turned out to be the wrong department entirely, but we weren't to know that at the time and they were incredibly thorough and I must say didn't mess about in making sure everything that could be tested was.

I was at first still under the GP surgery I had been registered with at birth and they were particularly obstructive - a very "old school" practice which was pretty rigid in its thinking. If it wasn't fixable in one appointment with one prescription they were quite happy to behave as if it was anyway. Once I upped and left, I had a much easier time. I firmly believe had I not moved to the surgery I chose to go to I would still be undiagnosed to this day. Only there did they decide to really investigate all the symptoms, hurry through relevant referrals onward without delay and think a little outside the box.

As much as I and other patients often have legitimate reason to moan about treatment under the NHS, I'm still incredibly grateful for its existence. I dread to think what that first round of futile testing under Gastroenterology alone would have cost me otherwise.