A favourite quote and a way by which to approach life.

Today is the tomorrow that you worried about yesterday.

Wednesday, 26 December 2012

Happy Christmas

This comes to you just minutes too late for Christmas day, but I hope you all had a very happy Christmas, and that you enjoy the rest of the festive season too.  I'm up in Edinburgh again, staying with Mum and J.  We've had a gentle day with lots of food, lots of presents, lots of telly, lots of turkey (my first turkey for 20 years!), a brief walk/trundle this evening, and a smidgen of alcohol.  Actually, the only alcohol I've had has been in the pudding that mum made, and which contained rather a lot of delicious Bailey's - mmmmmmm.  It's been a lovely day, and I feel very blessed to have had the Christmas I have.

I am aware that I need to do a proper update very soon, and that (yet again) it is far too long since I last posted, but rather a lot has been going on, and I've been exhausted.  One of the lovely things about coming up to stay with Mum and J is that I've been able to rest and get some much-needed sleep.  I'm away from all the stress and difficulties at home, and for a week or so I am free of hospital appointments.  Having said that, there's some question as to whether or not I may need to venture up to the Edinburgh Royal Infirmary at some point as I seem to have hurt my foot by running over it in my wheelchair.  I think I am possibly the only person who could mow themselves down in their own wheelchair whilst sitting in it, but I did.

I went to the local church last night for the Christmas Eve midnight service, at 11.30 ... Mum had been going to go with me, but in the end she was too tired so I went on my own.  It's a beautiful little church and I was made to feel very welcome.  The service was lovely, the address was short (which is what you want at a late night service, in my opinion), the carols were great, the organ/organist was stunningly fantastic.  I trundled back to the house in the freezing temperatures feeling warm on the inside.  I got to the front door with the ramp still resting in its place on the top step, but I thought that the door had perhaps knocked it forwards a little.  To make sure that it was going to be safe for me to go up, and to ensure there were no accidents (little did I know!), I thought it would be wise to push the ramp just a little further on to the step.  I took my feet off the footplates and put them on the ground behind so that I could more easily reach the bottom of the ramp and I bent forwards.  As I bent forwards my coat caught the joystick control of my wheelchair, thus sending it shooting forwards.  My feet, being on firm ground, stayed where they were, and the forward-moving chair propelled the rest of me straight ahead, and then straight down as my bum left the chair.  My coat eventually disentangled itself from the joystick control and the chair came to a halt, but by that time I was sprawled flat on my tummy, head-first up the ramp with the wheelchair on top of me.  I lay there for a moment thinking, 'Ow!' and then imagined myself spending the night outside in that position, knowing that Mum and J would have gone to bed.

Staying like that wasn't really ever an option, partly because it was so cold, and partly because bits of me were in rather odd and painful positions, not least my feet that were basically folded in half at the base of my toes, and weirdly angled in the middle.  I somehow got half way on to my knees, lifted my bum in the air, and twizzled my right arm behind me so that I could feel the joystick, which I then managed to knock backwards a little.  The wheelchair clunked as it fell off the backs of my legs, and I was able to get more fully on to my knees, although the bottom of my legs and feet were still underneath the chair, and kind of trapped by the footplates.  But once I got on to my knees I could twist round to see what I was doing with the joystick controls and was able to manoeuvre the chair backwards.  At last I got my feet out, sore as they were, and was able to scramble back in to the chair.  A good look around told me that, thanks to the long garden path and the fact that it was 12.30 am, nobody had witnessed my late night sprawl and clatter on the ramp, but a glance at the ramp also told me that it had indeed slipped a little way off the front door step.  I then did what I ought to have done in the first place: I turned off the power on the chair before leaning forward and pushing the ramp back in to position.  Only when I was safely sitting upright again did I turn the power on again, trundle up the ramp and go inside the house.

I'd only had one Bailey's and that had been several hours previously before dinner.  I can tell you don't believe me, but it's true!

So yes, I have a sore foot, which may need looking at, but I'm hoping it'll sort itself out in the next day or two.

Anyway, happy Christmas, everyone!

Wednesday, 5 December 2012

Something else

There has been another long gap between posts, for which I apologise, but it's been for good reason.  I've been putting off writing this post - the post I promised you would be next.  I'm having a tough time and I've needed a bit of space.

Back in at the beginning of the summer I started to get pain and stiffness in my hands, in all the small joints of my fingers.  It quickly spread to both of each of my knees, my elbows, my shoulders, my hips, my feet, and my wrists.  Every morning I wake up and dread moving because I know it's going to be painful.  I went to my GP and was referred to a rheumatologist with the suspected diagnosis of rheumatoid arthritis.  I have to admit that I was anxious.  Rheumatoid arthritis is a horrible disease that attacks the joints, but after reading about it, I was bracing myself for a confirmation of my GP's suspicions.

The appointment with the rheumatologist was on the penultimate day of my last admission for my asthma.  Luckily it was in the same hospital that I was an in-patient so I was still able to attend.

I was in with the rheumatologist for about three quarters of an hour.  He took a full history and family history; he noted symptoms; and he did a physical examination.  He then said that he's about 99% sure I don't have rheumatoid arthritis, but that I do have fibromyalgia, although he's taken x-rays and bloods to be certain, and to check a few other things that can cause similar pain.

I had heard of fibromyalgia before, and know several who have it, but I didn't really know much about it, except what I was experiencing myself.  Although I was obviously relieved that I don't have RA, because I was almost geared up to hear that I did have it, it came as more of a shock really to be told that I have FMS instead.  It's scared me.  I know it's not a degenerative disease, so I ought to be thankful, but it is a chronic problem, and it is a painful condition.  It is a condition that, for many years, was dismissed as psychosomatic, and because of that I have felt some stigma attached to it.  More recent research has shown that it's actually a Central Nervous System (CNS) disorder, and the rheumatologist described it as a sleep disorder.  It's very complicated, and it's been difficult to get consistent, reliable information about it.

The rheumatologist said that for one reason or another people with fibromyalgia have difficulty with sleeping.  Many have insomnia, but more than this, it has been shown that those with FMS don't go in to stage four sleep - the deepest part of sleep; the part of sleep that is responsible for repair and restoration.  As a result of not entering this fourth stage of sleep, the body has a pain response, which itself then leads to more disrupted sleep.  However, the answer doesn't seem to be as simple as getting more sleep, and sleeping tablets don't help.  In fact, not a lot seems to help, including many pain killers.  The pain that those with FMS feel is a nerve pain - neuropathic pain - so, it seems, is best treated with neuropathic pain killers, which are most usually used as anti-epileptic drugs (though epilepsy and FMS are not at all the same thing or related).  I have been started on pregabalin, although it's a medication that needs to be increased slowly, so I'm only on a very low dose at the moment.  It will gradually be increased.

I was told that the pregabalin may not be enough, and that I may need a referral to the Pain Clinic at the other big hospital in the city, where they have access to other meds, and other forms of pain relief such as TENS, although I don't know how effective TENS is in FMS.  I'm not at the stage of getting a referral to the pain clinic yet, though.

I've found it hard getting this diagnosis, and one of the things I've found hard is that many of those with FMS say that getting their diagnosis was a relief.  I didn't feel this way.  I felt ... I don't know ... almost physically winded.  I felt shocked, because it wasn't what I was expecting or had geared myself up for.  I've since felt isolated because I haven't felt the relief that others have spoken of.  But the difference is that, for many, probably most, the road to a diagnosis of FMS is very long with many tests and many referrals for investigations.  I haven't.  I'm pleased I haven't, but as I say, this difference has made me feel alone.  And I feel alone because FMS is a diagnosis that most people don't seem to know about, or they know the old thinking of it being psychosomatic.  It isn't understood well even in the medical profession, and I am afraid.  I'm afraid that many medics will have the same out-dated perception of FMS as a psychosomatic illness, and that when my FMS diagnosis comes to light while I'm being treated for my asthma, then the asthma too will be dismissed and I will be under treated.  Perhaps that doesn't seem like a fair assessment of how things might be, but I base this on past experience, not of FMS, of course, but of self harm.  My scars are very old, but they're still very visible, and sometimes those scars have made some medics discount my asthma.  I have been under treated as a result.  I have almost died as a result of that under treatment.

It is very dangerous for a medic to presume that because someone has had mental health problems in the past that the same person can't possibly have anything physically wrong with them.  It is very dangerous, but it does happen, and when it happens it can have disastrous consequences.  Because it has happened to me before with the scars from old self-harm, it terrifies me that the same will happen with current fibromyalgia, with old attitudes towards it, and my very real, very physical asthma.  I am at the mercy of medics and their understandings, and when I'm in the middle of an asthma crisis I have no voice because I have no breath to speak.  It is amazing, in a terrifying way, that even when I am like that, and medical findings in blood tests and x-rays confirm the asthma crisis, they can all still be ignored and disregarded if the medic has a negative mentality towards mental health issues, or physical conditions once considered psychosomatic.

So no, I am not relieved, and yes, I am scared.  I am very scared, and I feel very alone.