Chaos to Cosmos
The path from chaos to cosmos was discovered by telling one's life story

Thursday, 1 October 2009

2 years smoke-free

Today marks the second anniversary of giving up smoking. Some time before that I'd bought nicotine patches, didn't say a word to anyone, didn't make any promises that I may not have been able to keep - not even to myself - and put them in the bathroom cabinet for "one day", if that day ever came.

It was on September 30th, 2007, when I realised I only had enough cigarettes to last until the end of the day that either I had to rush out to the shops, or here was an excellent excuse and timing to use those patches. The patches I've regretted ever since and I still say they caused a mild infarction, or at the very least I had a violent adverse reaction to them.

Otherwise, after 2 years, the mixture of negatives and positives from giving up is, frankly confusing and somewhat comical. In a sense, I am very disappointed, because I certainly do not feel any better or healthier. For other reasons, actually, my health has seriously deteriorated in the last couple of years, so I suppose have to convince myself that it would have been MUCH worse, if I'd not given up.

I still get breathless easily, which, curiously never used to happen when I smoked. I still have a spontaneous, hacking, dry cough whenever I try to sing, take a deep breath ... that I also never had before. This year, I did volunteer for a lung function test because of these things and I was found to be absolutely normal. I'd told the nurse honestly how much I used to smoke and she had said, "Well, you got away with it." Which I figure is a good reason as any to stay stopped.

How much of my 55 lb weight gain is to do with stopping smoking, I don't know. The after food craving I've managed to lick with mostly only will-power. I've NOT to used extra food and especially not sugar as a substitute.

Two years on, I'm still getting cravings, although they are [too] slowly diminishing. First thing in the mornings is the worst and I still need a "fix" of strong, fresh, black coffee to kill that one, but I've also managed to reduce my coffee intake.

Worst of all though, is that without the barrier of my own personal "smoke screen", all my other allergies and intolerances have become much more acute. Things I didn't used to have negative reactions to, now bother me terribly. This is, I feel, also worsened by there being more pollution in the UK, closed housing with insulation, heating, synthetic carpets, etc., compared to the tiled floors and open doors and windows I was used to in Tenerife. 

Whenever I go out and might have to wait for buses, trains, doctors, etc., I make sure I have entertainment in the form of music, radio, book, magazines, as well as something nibble and water to drink. I feel like I'm taking a toddler out with all the supplies I need to drag along, but I still just CANNOT sit anywhere with nothing whatsoever to do. That is the surest way for me to reach into my bag absent-mindedly, expecting to find a packet of cigarettes and a lighter lurking at the bottom and for me to become exceedingly tetchy when I find that there are not.

On the plus side, I can enjoy other people's cigarettes. I find it strange that this doesn't upset me or cause cravings, but I actually find it "satisfying". It's bloody good value too and I'm making all sorts of friends at bus stops when I sidle up to strangers and ask, "Can I 'ave a whiff of your smoke mate?" :)

Looking back at the progress report I wrote last year, I'm seriously under-impressed to discover that, seemingly, nothing much has really changed or improved in the last year. I'll have to wait until I've had 5 years smoke-free and see if I enjoy a huge improvement by then. I won't hold my breath!

Wednesday, 30 September 2009

Good news and bad news

The good news: The results from my x-ray were that there was no evidence of damage, breaks, nor any underlying osteoarthritis that might account for the ongoing pain. The bad news: ditto all of the above.

Essentially meaning that it would have been better to find something that could actually be treated and that we must therefore assume that in the absence of any other evidence that fibromyalgia has switched the pain switch on and won't let it be switched off again. I already know that it simply does not respond to pain medications and, as I've explained before, in the English climate, I now have this pain 24/7/365. It never goes away and often keeps me awake. It's totally distracting and is often so bad that it often makes me cry, wince, sweat and feel nauseous. It hurts to put weight on the leg and hip and the pain is made worse by walking even short distances. I can't stand on it, I can't even sit on it and even lying down, I have to place my leg in very specific positions in order to make it just bearably comfortable. I really can't deal with this. The only thing I could do to have any quality of life is to return to a warm climate.

Exercise intolerance and post-exertional maliase

Exercise Intolerance Quotes
Those physicians and researchers
who are familiar with the disease of
Myalgic Encephalomyelitis (M.E.)
are in agreement that activity or
exercise can lead to a severe relapse.
For fibromyalgia, the advice is to get gentle exercise to keep moving and avoid ceasing up. This is essential and no-one advocates this more than I. In my previous life in Tenerife, the generally favourable weather and having a dog meant that most days I went for many, frequent short walks - always within the limits of my abilities - that kept me functioning but didn't cause undue strain. 

This is not the same as "the more you do, the more you can do" that applies to most conditions and to healthy people. 

Our limits have to be respected. For us, however, the last thing we should do is push ourselves to the point of pain. Same goes for exhaustion. The reason for that difference is central sensitization, which is generally thought to be an important part of FMS and ME/CFS.

Indeed, I have a leaflet here someplace - from a local source - which reiterates that, even for healthy people - you should stop exercise if it hurts, or you feel dizzy, etc. Hell, if I were to stop when it hurts, or I feel dizzy and begin to shake from overexertion, most of the time I wouldn't even make it to the bathroom. 

As it is, I get breathless going to the kitchen only about a dozen paces away!

Around 4,000 studies show why exercise is actually harmful and can cause a permanent worsening of symptoms. I'm diagnosed with and have symptoms of both fibromyalgia and ME/CFS. My own experience is that if I pass my limits, I pay for it with hellish flares. If I attempt to ignore my instincts and follow advice from the unenlightened to keep doing more, I do not find myself gradually able to do more, but quickly less: I hit a brick wall earlier and become less able as well as feeling so unwell that I can actually throw up, until I have no alternative but to take as complete rest as I can achieve until the flare subsides.

That is more or less what has happened this summer. In June / July, I attended a weekly course that was a mile walk and an 8 mile bus ride (each way). Add a few hours on very unsuitable seating and that one afternoon was more than I could cope with in a week, but I did also have other commitments to attend in that time; doctors, dentist, help groups, so I was walking an average of 3 - 5 miles in each of those weeks. Now I know that 3 - 5 miles is 3 - 5 miles more than most average people in the UK, yet still my GP advised me to exercise more!

This totally ignores me as an individual, the fact that I already get far more exercise than most "average folk" and that he's "preaching to the choir" - actually I'm not some lazy lardarse - once upon a time, I used to regularly go swimming, dance classes, running and weight-training, all whilst doing a full-time job, having a social life and working part-time as a security guard. FFS!

By the end of those six weeks this year, I was so exhausted and in pain that I can barely describe it. It's been like having all over toothache, with constant headache and nausea. It does not respond to drugs. It has been far too intrusive to ignore or be distracted from. My sleep has been disturbed, intermittent and of poor quality. My concentration has been so affected that most days I couldn't even follow the plot of a soap-opera and with the headaches and disturbed vision, most of the time I could only lie flat, eyes closed, hoping the pain / nausea would pass.

It has been tear-inducing unbearable. Eventually, after following my instincts to rest until I felt a bit better, in the last week or so, I've finally managed 2 days where I have been able to sit up for more than 15 minutes at a time.

Now that I am stuck in the inclement English climate, even when it's warm enough to go out and even when it is not raining, it's unbearably humid. In winter, my muscles just freeze up and my joints lock painfully in the damp and cold, so I can not manage to walk at all. Being over a mile away from any amenities, not able to drive, scant (expensive) public transport (and no seats at bus stops), means that to do the simplest of tasks - like visiting the doctor or getting fresh food - requires that I go way, way beyond my limits to cause such terrible flares of symptoms that it becomes impossible to function, let alone stay active.

It isn't always possible to get buses, mostly because there are so few. Buses hurt me anyway with all the jolting and, I cannot stand at bus stops where there are no seats. Walking hurts like hell, but it hurts less than standing. I've thought about a shooting stick or a folding seat, but I cannot carry anything. I brought a quiche back from the local store (300 yards) once and my wrist hurt for two days.

My balance is dreadful - I keep tripping over "fresh air" - and I get so much pain in my hip that I feel it might be of considerable benefit to me to take some of the weight off it and steady myself with a stick, but I don't, because I know my wrists can't take the additional strain. Because of the pain in my wrists, I bought supports for them to try to help alleviate the problem that way, but within hours of wearing them, my skin had reacted to them, dried up, become itchy and cracked to resemble the skin of a lizard and it hurt like a 1st degree burn.

During the last two weeks, since I went to the hospital to get my hip x-rayed, I'd not been out, first because I couldn't move after that 2-bus trip and, since then because I needed to rest up in anticipation of another outing.

Yesterday, I needed to go to the doctor's surgery to get the results of that x-ray, to the health shop for some supplements and to a supermarket for fresh salad. On the way from one to another, I purchased one item in a pet shop and looked, briefly, in a couple of charity shops. I reckon I was out no more than 2 1/2 hours in total. Hardly an excessive exertion. Just from this I was in so much pain and so exhausted that I had to get a taxi home. I staggered to the taxi rank. I was dripping in sweat so much that my clothes were damp and sticking to me. My face was red and flushed. I was breathless, I could hardly put one foot in front of the other and I was so hot, that had it not been for the sweat, I might have been worried that I could spontaneously combust. And I simply cannot describe to you how ill I felt with nausea and shaking. In fact, I had begun slowing up, exhausted, dizzy, nauseous and physically shaking from the "over-exertion" on the way out - about 200 - 250 yards from the house. That is my limit, but I cannot restrict myself to this; I am required to go to doctors, hospitals, benefits agencies, etc.

Friday, 18 September 2009

30 Things About My Invisible Illness You May Not Know

My contribution for Invisible Illness Week.

1. The chronic illness(es) I live with are: (with confirmed diagnoses) (1) Myalgic Encephalomyelitis, (2) Fibromyalgia, (3) Irritable Bowel Syndrome, (4) Low Back Pain, (5) Cervical spondylosis (arthritis of the neck) and Joint hypermobility. Plus C-PTSD. As if those weren't enough, I also have symptoms of all of the following commonly overlapping conditions; Interstitial cystitis (Chronic UTI infections), Migraine and Cluster Headaches, Multiple Chemical Sensitivity, Myofascial Pain SyndromeVulvodyniaPLMSSleep DisordersRestless Legs Syndrome, Temporomandibular Joint Pain.

2. I was diagnosed in the year: (1 & 2) 2008 (3) 1980 & 1986 (4) 1973 (5) 2010

3. But I had symptoms since: (1) 1973 (2) 1995, (3) 1980, (4) 1973 (5) 1990s and, with 20/20 hindsight, I can think of symptoms going back to my childhood and some ailments my ancestors had that now appear connected.

4. The biggest adjustment I’ve had to make is: Everything. Just trying to keep symptoms down to a manageable level is a full-time job, akin to the mythical, "Painting the Forth Bridge". Between things that I must do or must not do, must eat or must not eat, can wear and can't wear and, trying to find personal hygiene products, household products, clothing and shoes, medical treatments, etc., that don't cause allergies, adverse reactions or other nasty side-effects is seriously frustrating, but I have no choice but to walk on eggshells, every single day.

5. Most people assume: That there's nothing wrong with me!

6. The hardest part about mornings are: Waking up in terrible pain, getting breakfast and feeling exhausted, like I'm done for the day - this is without even considering ablutions. Insensitively cheery people when I'm shuffling around, visibly bent, clearly affected by something and feel like shit. Or asking me questions and expecting my brain to be functional before noon!

7. My favourite medical TV show was: Strong Medicine.

8. A gadget I couldn’t live without is: My laptop, because it is so often the only "window" I have on the world; the only way I can shop, socialise, etc.

9. The hardest part about nights are: Not being able to get to sleep, or waking early or having recurrent nightmares when I do manage to get some sleep.

10. Each day I take 0 pills & vitamins. Too many side effects: am intolerant of most medications, even OTC pain relief. Even supplements cause me to gag, or feel too sick to move after taking them now that I've had to stop everything.

11. Regarding alternative treatments I: Am willing to try things that make sense and aren't "snake oil", but generally can't because of prohibitive ongoing costs, the fact that they're rarely effective and almost invariably can't tolerate them.

12. If I had to choose between an invisible illness or visible I would choose: Neither, thank you! This is a tough one, because I certainly wouldn't like to have a physical deformity to deal with too (getting old, fat and ugly is bad enough), but the hurtful things people do because they can't/won't see my illnesses often feel worse than the physical pain I endure on a near constant basis. 

13. Regarding working and career: What career? I was "let go" due to ill-health, twice, in 1995 and again in 1997. I have documentary evidence to back this up (as well as the medical certificates issued to me last year [2008]), so it is not merely my opinion that I could not work. My symptoms have worsened considerably since that time and, I've deteriorated by a huge margin in the last year.

14. People would be surprised to know: I once had a brain. That worked! 

15. The hardest thing to accept about my new reality has been: Everything, but if I had to be specific: that I need help and am as entitled as anyone of having it.

16. Something I never thought I could do with my illness that I did was: I'm so physically impaired now - and bedbound 23+ hours a day - that I can't think of a single thing that would fit in this category. I suppose that, "retaining my sense of humour" is the closest thing that counts. But then that's sick too! :)

17. The commercials about my illness: Are for fake "miracle cures."

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

19. It was really hard to have to give up: My life, my dog.

20. A new hobby I have taken up since my diagnosis is: You're kidding?

21. If I could have one day of feeling normal again I would: Travel, catch up with friends, because most of them are dotted around various parts of the world.

22. My illness has taught me: That empathy and compassion, like romance, are the pure invention of novelists. Where they do occur, they seem to be rare and precious gifts. On the other hand, not to waste energy on putting up with crap.

23. Want to know a secret? One thing people say that gets under my skin is: Right behind those who persist in their self-serving beliefs that there isn't anything wrong with me, are those (including doctors) who suggest I need exercise. Especially when I was already having to walk 3 - 5 miles a week when they said it. Of course it caused me to relapse. And no, I've never recovered.

24. But I love it when people: Ask me questions and appear as if they genuinely do want to try to understand my illness and how they can offer help.

25. My favorite motto, scripture, quote that gets me through tough times is:
"When I despair, I remember that all through history the ways of truth and love have always won. There have been tyrants, and murderers, and for a time they can seem invincible, but in the end they always fall. Think of this -- always." - Mahatma Gandhi
26. When someone is diagnosed I’d like to tell them: Enjoy the "relief" in finally getting a proper label for your ills, which, no doubt, took a long time and much effort to get. Now, sadly, prepare for the real fight; to be taken seriously, to get the help you deserve, treatment (spoiler alert: there is none), benefits, etc. Get as much support as you can, join every group you can bear and talk to as many people with the same condition(s) as you. Don't let them drag you down an ever-decreasing spiral of doom, or an ego trip of "my pain is bigger than your pain" (sadly common), but this is the only way you will retain any sanity and, by hearing many near-identical symptom reports, will convince even the most cynical doubters that it cannot be mere coincidence or something you "made up."

27. Something that has surprised me about living with an illness is: How cruel people can be towards us. This says more about them. Don't internalise it.      

28. The nicest thing someone did for me when I wasn’t feeling well was: Just listening. Assuring me that I'm not going mad. Find someone qualified to give you this feedback: someone whose voice will rise above the noise of invalidation.

29. I’m involved with Invisible Illness Week because: I want to help make these invisible illnesses visible, because I would not even wish my worst enemies to suffer what I have - which has primarily been at the hands of those we're supposed to be able to trust the most (family, so-called medical professionals, etc.)

30. The fact that you read this list makes me feel: Hopeful that you will have gained a little understanding about what it is like to live with one (or several) of these conditions: that it can be of help to you or someone you care for.

Thursday, 17 September 2009

Hip, hip, hoo(x-)ray ...

Eight years ago
- it was September 2001, when the now middle-aged kittehs were still only around 6 months old - I was taking a couple of cats to the vet. With a full cat basket in each hand, the dog attached to my wrist on a lead and my handbag over my shoulder ... it had been drizzling and I slipped on the wet concrete slope leading out of the house. 

Not having any hands left free to save myself, I came down with an almighty, loud and VERY painful *CRACK* flat on my arse that echoed round the valley.

For ages afterwards, I could hardly move and was in excruciating pain, but I was too hurt to be able to drive, or get the bus to see a doctor, so I could only wait for the pain to subside. It never did get better completely and I was left with a clicking and clunking in my right hip joint, which constantly gets stiff and achy, but at least in Tenerife's climate, the pain was only really bothersome on the couple of days a month when there was a significant amount of rain.

However, since I've been stuck the UK, I've been in really severe pain 24/7/365 - like having a permanent "gnawing toothache" - in my hip. It never goes away and often keeps me awake. It's totally distracting and is so bad that it often makes me cry, wince, sweat and feel nauseous. It hurts to put weight on the leg and hip and the pain is made worse by walking even short distances. I can't stand on it, I can't even sit on it comfortably and even lying down, I have to place my leg in very specific positions in order to make it just bearably comfortable.

I've spent all these years teaching myself NOT to limp and to resist any temptation to place more weight on the left hip in compensation, lest I cause more trouble (so, of course, it doesn't *LOOK* like anything is wrong), but the pain also refers right down my leg, thigh, knee and to my ankle and foot. All of those joints and muscles hurt anyway, but the right side suffers worse. A year ago, I mentioned this to my GP, who merely suggested I bring it up with the Rheumatologist to whom I was referred for my fibromyalgia diagnosis, which I certainly did, but they did not carry out any specific examinations or tests on it either.

Meanwhile, none of the drugs I've tried ever does anything whatsoever to relieve the pain. Warmer "summer" (which in the UK, of course, just means "the even wetter season") weather did nothing whatsoever to help any of my symptoms, so I've been way past the end of my tether with it for months.

This could just be fibromyalgia. These symptoms are typical of the commonly overlapping condition, Myofascial Pain Syndrome (or MPS), but then again, it could indicate something else. If it did, that might mean that some treatment is available. When something hurts this bad, for this long, if nothing else, it would be a good idea to know that I'm not doing myself some permanent damage.

The GP did say that I couldn't have broken my hip - partly because I'm not old enough (I laughed at this backhanded compliment), but also because I wouldn't have been able to put weight on it. Oh really? This is not always the case. Do a cursory search on Google and you'll find numerous cases like this: GP failed to spot broken hip eight times, where the wounded appear still to be walking.

It would be better to find some damage that can be fixed, because if the pain isn't ever going to get any better and it's going to continue to resist medication, suicide starts looking like the best effective remedy. So, finally this week, I decided to get assertive and demand that the GP refer me to have this specifically investigated and I was asked if I'd like it x-rayed. Yes, I would. This was done yesterday and the results, I'm told, should be available in 2 weeks (... as I've waited this long.)