What is 'disabled enough' for some people?

What is it that makes some people think that they're entitled to their ill-informed opinions, which, when voiced, are clearly a cause of abuse and harm? This is something that happened to me, when another attendee at a yoga class - I would mention this was a gentle yoga class aimed at old folk and those of us with chronic conditions - saw that I'd parked in a nearby disabled space. She told me - in that haughty tone that people like her use - that I was 'not disabled enough'. When I told her I have a Blue Badge, she more or less accused me of fraud.

(Let's not even mention the "Have you tried yoga?" brigade. They can STFU! Isn't it enough I was pushing myself to try this in the first place? Shouldn't have.)

Anyway, knowing she would be likely to gossip to others in the group and slander me, I decided to write an open letter and hopefully nip it in the bud. At least make it clear to her that I was not about to let it go. This is what I wrote: 

You probably won’t realise just how upsetting your words were last week, but I was so upset I was unable to formulate a proper response at the time and instead went home flattened and emotionally spent. What I want you to know is that it’s precisely because I have a Blue Badge - and because my husband is able to provide me with a car - that I seem to be able to do things. It is only because I have these things that I now have some independence. I’m still only able to do something for a couple of hours on one or two days a week.

You certainly have seen on various occasions when I have had to sit out during yoga because I’m feeling too dizzy or unwell to continue. 

The whole point of coming to yoga is to try to help some of my symptoms and it is imperative that I am able do this in a friendly, non-judgemental environment. 

But you don’t see me for the other 166+ hours per week, most of which I have to spend either in bed or reclining on the sofa because I am too ill or exhausted to do anything else. 

This is profound, unrelenting, medical fatigue and weakness - not just feeling a bit tired - that means I may appear able to do things, but even when I can do them, I can usually only do them once before being exhausted. You can’t see that even the minor effort of walking a few yards causes me to feel exhausted, sick and dizzy. You can’t see my symptoms, but that does not mean they are not there or that I’m entirely able and not in need of help. In fact, it takes countless aids and adaptions for me to be able to have anything vaguely approaching a normal life – which is the whole point of these assistance aids.

You also weren’t there when I was diagnosed by GPs, rheumatologist, the pain clinic, the ME Clinic, or with those who carried out the assessments for my benefits and Blue Badge … 

You haven’t had to live with my chronic illnesses – and learned that pacing to avoid doing too much so I don’t exacerbate my symptoms is the only “treatment” available – for 41 years, since I was 16.  

Some days, I can’t do anything at all. Nobody sees me on those days.

So when you suggest that I am ‘not disabled enough’ to have a Blue Badge, or that the system is wrong for me to be able to get one, please consider these facts, along with the knowledge that I’ve crawled my way up from previously being constantly bed-bound to being able to do what I can today, precisely because I have help like a Blue Badge, but I could easily find myself back in that position if I did not. 

Maybe that would be disabled enough for you? 

(NB: I've since deteriorated, no longer drive and don't go out alone.)

Fibro Grinch Guide to Christmas

OK folks, what or whom first appeared in 1957, could well be described as "a bitter, cave-dwelling, catlike creature"; dunno about a heart "two sizes too small," but it doesn't seem to pump all that well; used to live in the hills around the snowy Mount Crumpit Teide and previously had for a companion, a very faithful dog?

On the other hand, I only feel green! (Sick.)

So, while everyone is stressing out to get Christmas things organized, I thought I'd write down my "secrets" for surviving the annual seasonal onslaught, short of preventing Christmas from coming.

1. Ban Christmas Cards 

This started when I first went to live in Tenerife in 1992. Christmas cards were not a Spanish tradition, except for the long thin, wordless Christmas Money wallets, only suitable if you were giving a gift of cash. Couldn't buy ordinary Christmas cards then, so I didn't bother. Later on, I couldn't afford the postage and then writing them, going out to get stamps, etc., became too much of a exertion, so I didn't bother to get back into the habit again either.

Now, I've taken to calling Christmas cards "murdered trees," which is a point I'm labouring, partly to cover my own lack of enthusiasm for the whole thing. Actually, it does seem a bit pointless (I'm not sure whether that's a result of my atheism or depression) and dreadfully un-green and, given that most of the people I wish to send seasonal greetings to are online anyway.

2. Ban Christmas Shopping

Bah bloody humbug. No, seriously, it helps having a family of only one and two cats to buy for, but while I can, just, stagger to the shops, I simply can't stand long enough to wait in queues, so it's pointless at this time of year, so I have managed to avoid it totally beyond buying a couple of "stocking fillers" in the pet shop and one pack of wrapping paper. Our local shops, it has to be said, don't offer a fat lot of choice in any case, so all my gifts were ordered from Ebay!

Apart from not being able to walk far or stand in queues, supermarkets are impossible, because I now need my reading glasses to see the products on the shelves, let alone their labels, but I can't walk around with them on. All the stopping and starting just results in dizziness and terrible nausea. I also can't carry shopping, so all the Christmas groceries were delivered.

3. Ban Christmas Cooking

All cooking is a pain in the arse these days. My wrists won't let me chop things (both through pain and lack of power), my legs / dizzy spells won't let me stand to prepare / stir / supervise anything and my foggy head can't cope with recipes containing any more than 3-4 ingredients.

Thus, we're having (there's only two of us) a breast of "non-abused" turkey from the local butcher, wrapped around ready-made stuffing, with ready-prepared parsnips and ready-peeled sprouts, before a bought pudding (all of these had their ingredients carefully scrutinized to mitigate my various food intolerances.) Mother will be conscripted to peel real spuds for roasting.

4. Ban Christmas Treats

Well, except for the one bottle of Spanish Cava which is the least likely alcohol to cause me any trouble. However, sweet treats have been restricted to healthy fruits like Satsumas, dates and nuts, plus some organic mincemeat and a ginger cake that both promise unrefined sugar.

And sticking to this, even at Christmas, I reckon entitles me to a Sainthood!

5. Ban Christmas Decorations

Actually, I "splashed out" a whole pound on a spice smelling candle for "seasonal ambiance," which is 100% more than I did last year. There's a bloke round the corner who has done a whole "Clark Griswold job" on his house with lights (remember National Lampoon's Christmas Vacation), albeit for charity, so I reckon that's enough drain on the National Grid for one area. I don't feel the least Christmassy and I'm sure some tacky crap isn't going to change it.

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 Syndrome, Vulvodynia, PLMS, Sleep Disorders, Restless 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 and malaise I endure on a constant basis. 

13. Regarding working and career: What career? I was "let go" due to ill-health, twice, in 1995 and again in 1997 and have been unable to work since. I have documentary evidence to back this up (as well as medical certificates issued to me in 2008), so it is not merely my opinion that I could not work. My symptoms have worsened considerably since that time. I'm now over retirement age.

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 the world.

22. My illness has taught me: That empathy and compassion, like romance, are the pure invention of novelists. Where they occur, they are 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 (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.

Tuesday, April 7th, 2009

World Health Day. Well, that's a bit ironic. Woke up with terrible post-exertional aches and pains in my legs again (as I knew I would), chest pains, as well as a sore throat and the snuffly nose of someone about to come down with a cold or a nasty dose of flu. All of which made it very difficult to go out again, but, since I had a hospital appointment, I couldn't postpone it.

Took the early bus to catch the train, but because the sun was shining (shock), it was too warm in the bus and I had to get off again as fast as I could because I felt so nauseous and thought I was going to throw up. Train journey was thankfully uneventful and I managed to catch the free bus to the city without having to wait as that was waiting outside the station.

Having had to come this far, I wanted to combine the trip with some shopping, so first I had something to eat, sat down for a rest and a coffee, but I'd had enough after looking round only three smallish stores and could do no more.

My legs felt like lead, were incredibly painful and I was absolutely exhausted already, so I gave up and went to sit in a cafe. Rather than make matters worse still by trying to hop around on buses - I really can't cope with this on any level; bus journeys are painful with the jolting, so the less, the better; I don't know the area, so I didn't know what buses I could catch and last time, I had to catch 2 different buses, wait around in less than salubrious looking surroundings and the bus stops are not that near the hospital - I got a taxi to take me to the hospital and took his card so I could get back to the station later.

As there are never any buses in this area at times you want them, I'd have to take a taxi from the local station home too, which means these hospital trips also get rather expensive. The cost of just this one trip added up to more than a third of my weekly benefits. But the "charitable" neighbour car service is no cheaper, it just provides convenience of a car, door-to-door.

And the upshot of today's outpatient visit is that it looks like I may have yet another pain problem / invisible syndrome to add to the laundry list: one I'd never even heard of until a few days ago, Vulvodynia.

"If you were unfamiliar with vulvodynia, you might make the rational assumption, based on the name that is was connected in some way to the vulva or the vagina, both would be right (guesses about Volvo cars would not, however, be correct)."

All we were trying to do was a smear test, but this proved impossible, despite 3 different people having 4 attempts (all with the utmost care and patience.) I'll spare you the fine details (definitely too much information) beyond that the pain was truly excruciating and felt as though I was being ripped apart like a chicken having it's wishbone pulled. It was a burning, searing, stabbing, tearing pain ... The whole experience was really harrowing and traumatic actually, enough that I screamed the place down, involuntarily. No, I'm really not exaggerating and, no these things didn't used to bother me in the slightest.

Dr. John Willems, head, division of obstetrics and gynaecology, Scripps Clinic believes that vulvodynia is a subset of fibromyalgia. (And, I'll bet he's right too.) It also says, "Vulvodynia is also frequently found in patients suffering from interstitial cystitis." The symptoms of which I've had for 35 years. It's also been more than 20 years since I found I couldn't use tampons; at least 10 years since I chose to have any sexual relations and had been around a dozen since I'd seen a gynaecologist, so this has probably been developing silently along all my other constantly worsening pain. Just never connected it all before. 

They suggest I discuss this with my GP, so that I can be admitted to hospital and be fully sedated to get this done. Noooo. Outpatient visits are one thing, but that's beyond my limit for entering any of the UK's third-world hospitals, voluntarily.

Attacked and slandered for being ill

Not the actual neighbourhood, for illustrative purposes only.

Several weeks ago in August (it's taken me this long to be able to deal with this), one of the neighbours in this street, a woman, decided to attack and slander me in the middle of the street, accusing me of being lazy and of sponging, delivering an uninvited and unwarranted lecture about how my mother "doesn't have to" help me and going on about how I should get a job and a flat and move out ... 

 
She was prattling on about how her parents would never help her (probably the crux of the matter, which is hardly my problem) and how they locked the door at a set curfew time ... The point of which, I cannot even imagine, except that it very adequately describes the sort of people they must be: the sort that would leave daughters out in the street in real danger, rather than protect them and, who probably think "trouble" only happens after a certain time of night. Don't know what you call people with ideas like that, but I call them ignorant.

She doesn't actually know the facts, so it was merely her opinion, and, it's none of her bloody business anyway, but not only that, she launched into this slanderous and defamatory lecture while I was talking to another neighbour, which made it extremely stressful to have my character assassinated in public.

(Oh yeah, I was on my way out for a 2-3 mile walk, on a rare day when the weather permitted, in an attempt to do what I can to get some exercise, improve my circulation, keep my ankles from swelling and most of the rest of me from ceasing up. If I really were lazy, would I do this, especially considering that I usually can't move for days afterwards? Right! It's bloody obvious, isn't it?)

Despite all that, I agree totally that my mother "doesn't have to" help me, but irrespective of my health situation (whether you believe there's a problem or not), irrespective of what parents should or shouldn't do for their offspring, I've made sure that mother, not me, confirmed her intention to "help." It's a matter for debate, whether you call it "help", with the considerable abuse I have to put up with to get it, but that distinction notwithstanding that's the end of the matter and whatever anyone else wants to think, it's none of their business.

Not that the woman had any right to know, but I felt I had a right and a good reason to defend myself against groundless criticism. I attempted to explain some of the facts, mainly in the hope that the other neighbour would be left in no doubt, but from subsequent comments from her - proffering more unwanted advice in a tone I can only describe as "snotty" - it's clear the damage is done.

Where could this woman have got her wild ideas, I wonder? From someone who has said something to give her the wrong impression, maybe? And, since I only know one person here and have only one relative, it's patently obvious.

When I got home, I went ballistic (I think, anyone would). Mother seemed shocked and looked worried (although, that doesn't necessarily confirm she felt that way) and immediately agreed that the neighbour had no right to do such a thing. 

It wasn't until a week or so later I got any further on the issue though, when my mother went to see this neighbour - just for a chat, as if nothing had happened. Apparently, the matter was never mentioned. Once again, I seriously questioned my mother's sanity to her face, utilizing a few of the choicer adjectives - given the gravity of this I feel that I am justifiably angry - if she could casually "pass the time of day" with someone who had verbally attacked her daughter in public.

In the end, with some more probing, I was finally able to determine from my mother that she had told the neighbour that she "did not believe" there was anything wrong with me. Of course we know "did not believe" is not the same as "there is nothing" wrong, but what is the neighbour going to hear?

Mother won't take her own daughter's word that she has pretty much all of these symptoms, that I'm in pain and have been for years. She knows I was chucked out of a job because I was deemed unable to cope with it 11 years ago. Despite all that, since I don't yet have a proper diagnosis [since been confirmed], with a diagnosis of "nothing," "nothing" must be what I have then, to her. 

Of course, it isn't! But she has therefore convinced herself that I must therefore be lying. Someone who lies all the time, I've come to realise, expects everyone else to lie like they do. And my mother, resolutely refuses to accept that the manner in which she's said this has had the exact same effect as telling people that I'm a liar, which is clearly why they have formed this wrong opinion of me.

NOTE: You'll notice that AT NO POINT do I identify the neighbour in question who verbally attacked me. However, I discover that they follow every word of this blog - and then pass information on to others who also have no right to interfere in my business - and decide to add to the abuse by then accusing me of libel. No it's not, because, what I've said is true. It wouldn't be even if I had publicly called the woman by name. Whereas, what she said about me in public is slander.

Finally a medical diagnosis

Finally, yesterday, after around 11 years of having no access to medical care and at least 35 years of worsening symptoms that have been ignored or brushed aside, I saw a doctor and to my utter surprise and enormous relief, he was perfectly happy to accept that the increased symptoms I've been experiencing for the last 13+ years are those of fibromyalgia ... and asked if I minded if he put that on my notes.

Frankly, I don't mind what he puts (well, I do, I'd rather it correctly say Myalgic encephalomyelitis (ME), but since the NHS no longer use that and uses Chronic Fatigue Syndrome (CFS) instead - impossible for me to have as I'd been ill for a decade and a half before that awful crap misnomer was invented - I therefore prefer Fibromyalgia be used as it sounds more like a 'real' illness), as long as he accepts that there's something to investigate, because, in the exceedingly long story that ensued during all this time, as I explained to him, the worst part (above the considerable physical pain I've endured) is having been doubted and treated as a liar by my own family. Better yet is that he gave me a medical certificate with the word fibromyalgia printed on it that I was able to wave under my mother's nose. She sniffed at the paper with an air of suspicion then denied ever doubting me - when she'd said, "Oh I believe you, but I want backup."

I'm sure you get the irony / contradiction. She still doesn't, but lets see if that's enough to satisfy her and if she's capable of treating me any better now.

[No, of course, it wasn't. She later declared that "it's only on paper" and she won't believe it until the doctor tells her himself. This would be funny if it wasn't true. I'm 51. He won't discuss my health with her. Obviously? No again. She refused, utterly, to believe that the concept of patient confidentiality exists. When I assured her, once again, that it does, she declared it was "wrong". The diagnoses of both Fibromyalgia and Chronic Fatigue Syndrome were later confirmed - in writing - by my Rheumatologist. This letter was accepted as evidence by various bodies, but still not good enough for my mother.]

Anyway, the doctor wanted to get some basic information about me on that first visit yesterday - none of my notes have materialized yet (if they ever do) - and he's sending me for some blood tests; cholesterol, sugar, etc., but his intention is that we take a holistic approach (how I LOVE to hear that word from a mainstream medic), work out a management strategy between us and then tick off the issues one by one, as I'd made it clear that I have a list. 

(The positivity was pretty short-lived as nothing has been treated since.)

Nothing is simple, of course, because I have to go to hospital for the tests (on Monday), on an empty stomach. It will take two buses and a taxi, cost around £20.00 return (for the approx. 5 mile journey) yet, because of the bus times, the earliest I can be there is 11.30 in the morning. A bit late to be still starving as the nice lady at the hospital, who made the appointment, kindly pointed out!

The way she asked "Fasting or non-fasting?" sounded funny too, like "smoking or non-smoking" used to sound, when you had a choice on flights! :)

Still, it should represent a step forward, provided I don't faint on the way.

But getting any diagnosis after this long is a bloody miracle!

30 Things About My Invisible Illness You May Not Know

Winter in June

After 16 years in the sub-tropical Canary Islands climate, not surprisingly, I find it cold here. It may be June, but the temperatures are what I know as winter. Not to mention cold sensitivity because of being ill. But my mother won't make any concession. She merely snapped that "it's not that bad." Maybe not, to her. 

All I've been able to do to is pile on what clothes I have (not many: I was limited to a 20 kilo suitcase of clothes that are only suitable for that sub-tropical climate anyway) and stay in bed to try to keep warm. I can't go out, I can't afford bus fares; there are not many places one can safely walk. It's too cold anyway. 

The result is that the cats and I (except an odd walk in the garden) are mostly confined to one small room and we don't even get peace and privacy in that.