June 29, 2017

Episode 4 Doctor in the House

Posted in Health stuff, June tagged , , , , , at 5:41 pm by viewfromthisdesk

This has been the episode I’ve been most looking forward to as for a while I’ve known it was about exhaustion, ME, fibromyalgia and similar conditions.  I wasn’t expecting to get a massive breakthrough, but I was hoping for enlightenment.

I totally resonated with the statement ‘I just want to feel normal, I don’t want to be this tired, I just want the pain to go away’ and then the most real one ‘they give out pills and then some more pills and then different or stronger pills and then pills for the side effects’ this is SO TRUE.  Ten minute appointments with a GP or a consultant literally just gives you a new prescription.  Meds help for sure, but they’re not the answer.

The doctor talked about how fibromyalgia and ME are mystery illnesses.  This is very true.  Doctors have told me on more than one occasion that fibro and ME are diagnosis’ given out when nothing else applies.  When all other things have been ruled out.  And indeed, that was true in my case, I spent years having tests for thyroid issues, scans for MS, blood taken for Lyme and lupus and vitamin deficiencies, electrical hook-ups for nerve damage assessment.  These were done repeatedly over these years of an unknown title to what was wrong.

I had a course of B12 injections which I didn’t think changed anything but I know some people find them amazing.  I also went gluten free for six months and felt more awful after that than ever before but again, I’ve found some people who swear by GF living and the improvements this gives to their ME.

I’ve never gone diary free but I don’t consume a huge amount of dairy.  I also don’t drink alcohol anymore.  I am aware that some people drink to numb the pain.  It’s utterly understandable, I would.

I saw the frustration in the faces of the family members.  The fed-up-ness of there not being answers, of the restrictions in the lifestyle and the reliance on pills.  And to some extent, there’s an element of suspicion – it can’t be as bad as they say.

The wish to maintain a normal life in terms of work or family responsibilities is so true for anyone with one of these invisible illnesses.  We push ourselves to be normal whilst physically struggling.  We want to be a good partner/parent/friend.  We cannot physically be that good but we push and push and push.  And yes, I’ve been told so many times that it’s not real, that it’s in my head and I just need to change my mindset or snap out of it or get (pay for) some CBT therapy so I retrain my brain to ignore the pain and exhaustion sensations.

Ignoring the pain and exhaustion and not being kind to ones self is a common thing with ME and fibro.  No one believes us so why should we believe ourselves?  Not coping with life, feeling like a constant failure is very real.  Regardless of whether you’d say that to another person or not is irrelevant, you have a reduced number of friends with ME and fibro anyway.  People are sick of you cancelling or leaving early or not getting wasted with them so they fall out of your life.

Going GF didn’t help me.  I don’t eat a lot of sugar or junk food, and whilst rainbow eating was fun, I didn’t feel any different then either.  It brought other issues and challenges as well but eating more fruit and veg is always going to be a good move and I’m working towards that every day.

I was hoping I’d get some magic solutions from the program, hoping I’d get something new to try or think about.  I’m struggling this fortnight, I’m sleeping during the day more, having chronic headaches and brain fog.  Alas, there is no magic wand, the Doctor was not in my House to solve my issues but it was helpful.  I felt like I wasn’t alone, I saw myself reflected in the people on the show.  I wasn’t a liar, I wasn’t imagining it.

I’m very certain that my mental health has a huge impact on my physical health and that’s something that maybe I need to focus on more this year.  Stop worrying, stop stressing, try and reverse or remove the depressive feelings I get.  I have no clue how I’m going to manage this but I know I have you guys to help me get through each day; one day – nay, one hour – at a time.


July 5, 2016

Learning the art of balance

Posted in July tagged , , , , , , , at 2:29 pm by viewfromthisdesk

I’ve been utterly awful at the whole ‘pacing and prioritising’ thing that the medical peeps bang on about.  I’ve been brought up with the ‘if something needs doing, get on and do it’ attitude and approach.  It’s hard to change something that has been forced into your brain for so long.

This year has been the most challenging for me so far.  I’ve spent way more time on my crutches than in any year previously.  I’d like to claim it’s because I want to show off my gorgeous coloured sticks but it isn’t.  My joints and balance have been particularly horrendous this year and I cannot attribute it to any particular reason other than this condition is deteriorating.  I’m not doing as much physical stuff as I used to or indeed want to.  Any fun event is wrapped in days of resting and relaxing and neoprene things.  My bat work is set up on the basis of not much walking around on site and me being somewhere I can sit for the survey which is neither professional or ideal.  Concerts are few and far between this year.

On the back of all that misery however, I had a light bulb moment last week which I feel deserves praise.  I was working away for ten days, at what I call my temping job.  It’s a tough gig though.  It’s a proper eight to nine hour day, it’s constantly busy and noisy and bright.  There is nowhere to hide, nowhere to escape to when it gets too much and certainly no flexible working hours.  It always makes me ill and I’m absolutely aware it makes me ill so nothing *should* be planned for the time I’m temping.  Nothing except sleep and more meds.

In previous years, I’ve taken the approach that of course I can do it all.  Of course I can temp and keep house and do bat surveys and have a social life, of course I’ll be fine.  With bad consequences.

This time, I literally just did temping.  The house is now a mess, I turned down bat work and I had no life outside of the nine hour day.  It was work-home-pyjamas-sleep.  So I managed some time of balance.  Not in the literal sense because I was on my multi coloured sticks for the whole time, but balance in terms of not trying to do it all.

But how do I now not over compensate for this week of being sensible?  This week I have booked three surveys with another as a possible.  I desperately need to turn into some crazy person with the ability to clean the house (even though housework is one of my worst pain triggers) and make it all look normal and respectable.  I just can’t do everything in a sensible and balances fashion, I’m wading through treacle whilst being stuck inside a constricting jumper.  I can’t employ someone to clean because I can’t afford it.  I can’t turn down temping or bat work because I can’t afford to do that too.

I’m clinging to the ‘look how well I did last week’ attitude in the hope that no one will notice what a mess I’m making of this week!

August 7, 2014

Hydro hilarity

Posted in August tagged , , , , at 9:32 am by viewfromthisdesk

Yesterday was week two of hydro and after last weeks debarkle I rang the physio department first thing to find out if the pool was open or not.  Had to leave a message which told me that someone would get back to me within 48 hours, but if they didn’t please could I call back.  Needless to say, I didn’t get a call so I didn’t make the drive over.  Regardless of how nice a hot wax treatment is, it’s not worth the stress of driving or the over-inflated parking prices; Worcester hospital is the only one I go to that doesn’t have concessions for blue badges.

I’ve spent three days home alone this week whilst hubby went away to north Norfolk.  I thought I would struggle and hate it but I didn’t.  I actually really enjoyed it.  I was able to keep the house tidy and clean up after myself and none of the cats or chickens have died on me so I can’t have done too badly!  I also managed to paint and nail-foil my toes and they don’t look too shabby.  Result.  I’ve asked him to go away without me again.  Frequently!

Words with Friends and a couple of excellent books are possibly to be congratulated for my sanity, especially since our second sky+ box has given up the ghost.  Not good.

December 4, 2012

What’s with the traffic this morning?

Posted in December, Health stuff tagged , , , , , , at 9:17 am by viewfromthisdesk

It took me thirteen minutes to drive across town, that’s daft!  I know that I *should* have walked, what with it being a gorgeous morning but that’s the thing with M.E. whilst I may feel that walking is a good idea, my body would rebel and I’d be flat out asleep for a few days.  Pah.

So, quick update for you: it’s been a year since I started WW, and I’ve managed to maintain my finishing weight which I’m really pleased about.  I’d kinda like to lose another half stone by the beginning of February but I’m not off to the best start because the shops are full of mince pies and cheese selection boxes <drool> so I will see how things go.  I would say watch this space, but I’ve not been the best blogger, have I?  Sorry.

Update on the medical stuff: M.E. is still pants.  Hate it.  My fibro is still making me want to scream and cry on a daily, no, hourly basis.  My lovely GP tweeked my pain meds last week and warned me that one of the side effects, whilst I got used to it, could be insomnia.  Oh how I laughed.  Hysterically one might say.  Insomnia with M.E.?  Pull the other one.  Well, he was right and that’s really, really rubbish.  Not that the fellow was right but that I had insomnia for about a week.  Oh what a lovely, not at all grumpy person I was.  He’s also (following my request) going to see if the dietary team will see me.  There’s lots of research into diet and intolerances and M.E. and I’d like to see if there’s anything I could do or try to see if I could increase my energy or be in less pain, that would be lovely.  Fingers crossed they’ll take me on.  I’m also seeing a new specialist in Birmingham who is looking into lots of mysterious things to maybe explain why I have so much numbness and lack of feeling as this isn’t a usual thing with M.E.  Got to go back to the gynae team which I’d like to say is pants, but that’s a really poor joke.  Thought I’d finished with them seven years ago but it seems, it isn’t to be.  Cheap thrills on the cards for me then, middle aged men having a rummage, hoorah.

Changing the subject (very) quickly, am going back to Lundy for Christmas. Can’t wait.  Sunshine, fresh air, good company and a change to relax and recharge.  Bliss.  But I haven’t got an advent calendar to count down this year, so no chance of chocolate for breakfast.  

Hmmm ….. wonder if the pound shop has still got some?

December 13, 2011

Getting one’s hopes up.

Posted in December, Health stuff tagged , , , at 6:04 pm by viewfromthisdesk

I made it quite obvious that I was hoping this Consultant this afternoon was going to change my life.  Yeah, that was a foolish assumption.  Hubby came with me to the appointment, as he does with all of the specialists and even he’s left thinking ‘what the heck was that for?’

The guy agrees I have cfs.  Not an issue.  He also says it can’t be cured or prevented, which we already knew.  Says I need to learn what my triggers to falling asleep almost instantly are and work around them.  Says I need to work less hours, sleep more and do some exersize.

So.  Taking them in no particular order, how does he propose I exersize with the fibro?  Name me a non-impact form of exersize that is free.  How the heck to do I anything MORE than what I’m doing now, without hurting myself?  And sleep more – seriously?  I’m in bed by 9pm most nights, not the midnight I used to be able to do.  I can’t get up in the mornings, I’m falling asleep at mydesk around 3pm. When am I supposed to fit in any more sleep and actually live a life worth living?

And work less.  For heaven’s sake, I’m not working 37.5 hours as it is, I haven’t for ages!  When I pointed this out, he just said I’d have to cut down even more.  When I said I couldn’t afford the second drop in income he turned around and said ‘why should chronic fatigue be any different to cancer? If you had cancer, you’d stop working in an instant if it meant you had a better quality of life.’  What I would have liked to have said to him was that if I had cancer, I’d be signed off as unable to work and would be able to claim some sort of benefits to enable my income to remain vaguely steady.  I’d also get free prescriptions and some help with living my life to the full within the constraints of the awful illness that I was experiencing.   But I have cfs and fibro.  None of the above apply.  The system doesn’t work.  I have no help, financially, emotionally, physically. 

He says I’m going to be referred to the OT team who will teach me to pace and prioritise my day.  What a waste of time.  I had all that last year with my OT.  Who accepted I don’t have a normal, nice nine to five that has regular things happening at set times.  Pacing doesn’t always work properly on my desk.

Hacked off doesn’t even come close to how I feel right now.  Hubby says we’ll work it out somehow but I honestly don’t know how we’re going to do that right now.  Any ideas peeps?  I’m all out.

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…..