November 30, 2011

Happy Anniversary Me.

Posted in Health stuff, November tagged , , , , , , at 2:26 pm by viewfromthisdesk

Today is six weeks (and one day, but don’t be picky!) since my diagnosis. Actually, you should probably stop reading about now and grab a cuppa, it’s going to be heavy.  And long.

You back? Comfortable? Good.  Six weeks ago I was diagnosed with fibromyalgia and chronic fatigue syndrome.  I generally refer to them as fibro or FM and cfs.  It’s just easier that way.  Chronic fatigue syndrome is the new politically correct name for ME.  I can’t spell that in full, it’ll have to do as an abbreviation.

Today is also two weeks until I see the cfs specialist.  It seems like a lifetime away. So yeah, happy anniversary me.  I need to explain how I’ve got to this point of writing this blog so, here goes with a little (pah!) background.

A little over three years ago I had problems with my back.  Not so conveniently just before my wedding day.  Was subjected to quite a lot of treatment by my lovely osteopath and somehow, made it down the aisle and through the day.  My back recurred frequently and seeing the osteo and painkillers became a way of life.

In the summer of 2009 I was visiting a very good friend and something happened to my ankle.  We were just walking and when I got back to her house I noticed my foot was really hot and tingly, almost as if my shoes had been too tight.  Thought nothing more of it until I woke in the night in excruciating pain and unable to walk or stand on my now, considerably swollen foot.  A trip to the local A&E said I had strained my Achilles tendon and I was to see my GP when I got home.  I duly did and he gave me anti inflammatory pills which didn’t work, so he gave me some different ones which didn’t work either.  He told me to stay off my ankle but couldn’t give me crutches, so I had to hire some myself!  He sent me to physio which was painful beyond belief and eventually when they realised it still wasn’t healing, they sent me for an xray and ultrasound, which three months after the event, wasn’t much use.  The ankle is now permanently weak, clicks every time I step up or down and swells if I walk for too long.

In the summer of 2010 I was bridesmaid for another good friend.  Such a fun morning, getting ready, hair, makeup, lacing up her dress and all that.  Was about to leave where we were getting ready when I realised I couldn’t hold my flowers without shooting burning pains flying up my wrist.  Not fun.  This was a Friday and I thought I must have just pulled a muscle in the rush to get ready.  By Monday I was in so much pain it was unbelievable.  Tried to see my GP, got some locum instead who gave me some pills and told me to go away.  Pills were useless so I saw the same guy the next week.  He gave me some harder painkillers and told me to rest my wrist.  How could I? I’m right handed for goodness sake!  I went back, insisted on further tests. I couldn’t grip or hold things, I was struggling to do everyday tasks.  He sent me for an xray which showed I hadn’t broken anything and eventually, he sent me to a rheumatologist at Cheltenham.  Tonnes of blood tests and an ultrasound and weird mobility tests followed which came back to say I didn’t have anything like osteoporosis or osteoarthritis or any form of arthritis at all.  I was referred to the occupational heath team who I have to say, were BRILLIANT.  Helped me with splints and supports and aides at home.  They couldn’t give me everything, I’ve had to buy tonnes of stuff too, and it’s not blooming cheap.

Just before the wrist incident, I’d been referred by my dentist to an oral specialist as I mentioned in passing that I couldn’t feel half my mouth or any of the left side of my tongue.  That pointy thing they use to scrape your teeth proved this, couldn’t feel a thing.  The oral specialist had shed loads more blood and sent me for an MRI.  The fact that most of my extremities are numb apparently was a worry too.

The referral by rheumatology to pain management was fun.  He decided to test the numbness that I mentioned.  Transpires I can feel very few areas on my face and body when stabbed by a pin.  He was intrigued and said that I should wait for a diagnosis before learning how to manage my pain.  What a waste of time that was.

Rheumatology couldn’t do much once they’d worked out there was nothing wrong with my joints ‘mechanically’.  They said I had to see a neurologist.  So we trundled back to my GP in the January of this year and a referral was sent off to Cheltenham.  I took to my appointment with the consultant, two sides of A4 of random things that I’d gotten used to – the bad joints, the problems with my speech and balance, the pins and needles and cramps and numbness in my body.  The fact that I’d only know I’d burnt myself because I’d smell it.  He wasn’t interested.  I walked into the room and he said ‘you haven’t got MS, you need to see a psychologist as you have an adverse reaction to pain.’

Thankfully, my GP was horrified by this reaction.  He sent a second referral to pain management, and when I worked my way through the system, the pain management doctor sent a referral to neurology in Gloucester.  He also advised me to start taking a drug called amitriptyline.   It’s an anti depressant but blocks nerve signals so should reduce the pain sensations.  I hated it.  It made me feel so spaced out and zombie like that I couldn’t do anything at all.

Neurology at Gloucester were great.  They looked back over everything from all the years previously, they found all my results of blood tests and xrays and ultrasounds and the MRI.  They said that they did not believe I had MS which was my GP’s (and had been the oral teams) concern but they sent me for another MRI and a nerve conductivity test.  Both came back normal, which is good.

The excruciating pain in various joints, the dizziness, the lack of balance, the speech problems, the numbness, the seeing of coloured shapes and black spots, the lack of sensation in my fingers, the weak joints, the inability to fight colds or heal wounds, the extreme fatigue and ability to sleep for 18 hours but still be exhausted, the mood swings and overly sensitive (to touch) skin and numerous other weird and wonderful things I experience on a daily basis can be attributed to Fybromyalgia and Chronic Fatigue Syndrome (ME) Finally after three years, I have a diagnosis.

FM and CFS cannot be fixed.  They are here forever.  I have to learn to live with and manage these illnesses.  There is no cure.  The impact these have on my daily life is overwhelming at times.  When I can’t get dressed because I can’t do up hooks or buttons and end up in leggings and a sweatshirt, so making me look lazy when it’s not intentional.  How embarrassing it is to ask someone to cut food up for me because I can’t hold a knife.  To be unable to have my husband hold me because my skin feels like it’s on fire and to have him touch me is unbearable, and at times, having sex is impossible.  My osteopath has rearranged my hips and pelvis so many times he doesn’t even ask what I’ve done anymore.

I can’t sit still for long, I find travelling really difficult.  I have no energy and have to plan for the simplest of things.  A night out cannot be spontaneous.  Seeing friends and ‘doing stuff’ is a mammoth task.  I’ve had to buy lots of things to help me continue to work – the government recognised I needed assistance and very kindly gave me a 27 page report of things I need for my continuation of work with a shopping list of almost 9 grand.  They would give me funding for £215 of it.  Awful situation.  Thankfully, a certain internet auction site, boxes of brick samples and a very, very nice man with an ex-display (therefore reduced from almost 2k) chair came to my rescue.  Still shed loads of money that I didn’t just have tucked down the back of the sofa but there we go.

So, for those of you that I know directly (as opposed to a total stranger that may have stumbled upon this by accident) I’m sorry if I don’t accept invitations to parties, or don’t visit for the weekend.  I’m sorry if I seem moody or unapproachable; chances are I’m in bucket loads of pain and am finding just being upright an impossible task in itself.  I cannot hold a pen for long, writing birthday cards is so hard, so if you get one and hubby’s written it, you know why!  I do not intentionally miss things or avoid people.  I generally can’t feel that I’m holding anything so I drop stuff.  A lot.  I started a new drug called pregabalin which is an anti epilepsy drug which should help with the pain on the day of diagnosis, it wasn’t coping entirely, so two weeks ago my doctor doubled the doseage and we’ll see how that goes.  The reliance on hard-core opiate-based painkillers has to be reduced!  I’ve had a course of B12 injections to hopefully help with the cramps and fatigue.  I have been referred to specialists in CFS and will get another OT.  My doctor isn’t trying ‘third referral lucky’ for the pain management clinic, he says the cfs specialist will sort out all my needs.

I struggle daily there is no other way of putting it.  And yes, I know, I don’t look sick.  Please don’t ever say that to my face, I will roll my eyes and mutter to myself.  And please, don’t pity me or feel sorry for me.  I’m alive and I’ll learn to live with these illnesses.  There are people who suffer more than me.

I’m sharing this, as openly and as honestly as I can.  I don’t ask for help, I won’t admit how much pain I’m in, you essentially have to be a mind reader.  You need to tell me to stop doing something and bully me into resting.  There are times I will ask for help, that’s pretty desperate for me.

I know I’ve been blasé about everything over the years.  I know I’ve joked about not being able to open things or hold stuff, I laugh about breaking items, but inside, I’m mortified.  I’ve tried to hide the pain with humour was how it was once described, and yes, it’s true.  But it’s led to you all thinking I’m okay, that I’m just being rude or unapproachable.  Which has shot me in the foot.  I need you all now and I’m going to need you all for the long haul.  I need love and help and support, be it physical, emotional, mental whatever.  I can’t always reply to emails straight away, but hearing from people is the best medicine; be it texts or emails or things in the post.  I know I’m super special if you’ve splashed out on a stamp!  And don’t you dare think you can’t hug me.  Hugs are welcomed 24/7.  If it’s uncomfortable, I’ll ask you to move your arms slightly, but that’s it.  I’m not going to ask you to not hug me.  I am not contagious, I will not break.

This blog was the idea of a top friend.  I can’t take credit for filling your inbox with email updates. I find typing incredibly hard and although I’ve found some brilliant straps and gloves and things, I can’t keep the energy levels high enough to sit and concentrate and not cry out in pain.  I know people care about me and want to know what’s going on so this is it.  I’m not emailing people every day to say how I’m getting on, I’m keeping my social network free from pain or energy level updates.  Well, I’m exhausted, so I guess you must be bored stupid too. Until tomorrow…..


Is that all I’m allowed?

Posted in November, Weight Watchers tagged , , , , at 11:44 am by viewfromthisdesk

Yesterday was day two of my weight watchers life.  I can’t say it’s been all fun, I think the reason people lose the weight on ww is because it takes so blooming long to calculate the points values of anything!  By the time you’ve worked out if the half packet of chocolate digestives fits within your daily allowance, you don’t want them anymore and the craving has passed.  But a milestone in my life was achieved yesterday; for the first time ever I had all of my five a day.  I know, impressive.  However, there is always a downside to everything in life; I was really surprised at how little I’m, well, supposed to eat as a ‘normal’ portion size.  I don’t know how many times last night I wailed the words ‘is that all I’m allowed?’ 

It was really difficult last night, we had planned to have pork chops for tea, yes, I’m one of those sad people that plan out their meals a week in advance but anyhow, pork chops were on the menu.  I found out the points values via the internet and got home and dug out the scales.  (As an aside, my scales in two days have never been used so much, I’m sure they’re going to go on strike over poor working conditions and capped pay increase, I’d happily tell them to go and get a job in the private sector and learn what really life is like without the promise of a 50% value of pay pension payout and no guaranteed pay rise each year but I digress)  so I’m now weighing out all my food, which is proper tedious.  100g of cooked rice is NOTHING.  And the amount of pork chop I could have for tea is about half what I would normally have!

 I’m finding that side of things the biggest struggle, the re-education of portion sizes.  But, if I eat fruit instead of pudding and drink water during the day then I don’t feel hungry, which I guess is the main thing.  Time will tell if I can stick it or go stir crazy.  Day two and I’m shouting at my plate of food, what will I be like on day seventy-nine?  Oh my days.

November 29, 2011

How to work this thing?

Posted in November at 3:40 pm by viewfromthisdesk

Well, I’ve taken the plunge and signed up for this.  There’s lots to talk about and I’m unable to type for very long so a blog seems the way forward.  One session to kill the fingers, no need to repeat myself and everyone who wants to know what’s going on, does. 

I’m going to witter on about my health mainly.  A blog seems to be a sensible diary for me to monitor my issues and keep track of how I’m feeling or getting on with life, the universe and everything.  I’m also going to randomly rant about my brand new excursion into the world of weight watchers.  I have a bizarre cynical outlook on the world, it’s neither going to be pretty nor fun.

Welcome.  Oh, and thanks!