The world from my bed...

How does the song go - its been seven hours and fifteen days since you took your love from me.. In the same vein fibro its been seven hours and 4 days since you took my spoons away.

After a lovely if slightly busy weekend seeing friends and a wedding venue, I admit using all the energy having a "life" would have the inevitable cost I just didn't quite expect it to land me in bed since Sunday evening.

Its a curious thing the fatigue that is very common with fibro, bone weary exhaustion that no matter how much you rest it doest go away when your spoon drawer is empty. You'd think sleep would be on the horizon, sadly not the case - as soon as its bed time and I'm feeling even more uggggg..my body decides its time to release all the pain its stored for the day, and my brain goes hot and jingly leaving me unable to sleep for more than a couple of  hours 1 thing feeds the other and so it goes..there is more to it, the muscle spasm, not being able to concentrate very well,. talking is a nightmare.

I have never thought about it before, but while i can type away in short bursts the act of conversation becomes impossible - even the simple act of deciding what to have for tea reduces me to a gibbering mess of incoherence or understanding summoning the mental strength to do more than "i don't mind love you choose" is hard.

Its January, cold, miserable and Ive managed to avoid prolonged stints in bed for a few months - yay she says hollowly like its a great achievement. Lovely Man as ever is brilliant, i would be a unkempt hungry woman by now living on cereals - I'm currently banned from using the microwave after scalding my hand with soup my only attempt at fending for myself..resulted in trashed kitchen, him dashing home from work and me narrowly avoiding a trip to A&E - we decided i was better off with a sandwich

Its not all bleak - despite the inability to watch TV, talk, or listen to ill informed people trying to justify cutting the poor adrift without a life raft and assuming it will be ok on radio 4..so how does a spoonless wonder like me occupy herself...

Online - I am struck and finally you say she reaches her point, how on earth would I have coped before the interweb. I seriously don't know, and not sure i want to answer it either. Would you be shocked dear reader to know there are probably 10 million people in the Uk from young and old and all shades in between we are everywhere yet nowhere..very often invisible or in denial..It was only when I became chronically sick did i really think about it - despite working with people in the community for years. Im struck now that very rarely did i work with people who were sick or disabled after all where to find them - I could hardly go in to their bedrooms now could I?

The last few weeks galvanised by some brilliant courageous people the "disabled and sick community" have come together, like all people its made up of individuals collectively doing something - the Internet and social media has been embraced and used like never before. many have come out of the shadows and raised their voice. this week Ive been tapping away and collaborating with people i may never meet to use skills i had thought were left behind the day I stopped working - deciphering a consultation document - you might think thats a tad dull but it has energised me in a way I didnt believe possible, i might not be able to make soup safely but i can still do something be useful and have a purpose.

That purpose is to contribute towards the efforts already being made, so people who it really matters to can have their voices heard, can participate and be part of a community they may never physically see. The view from my bed is suddenly bigger and brighter than i thought. I wont be in bed forever and tomorrow this flare may go, hey i might manage to get back to being a sofa person next week. I have places to go and people to see..and some of them are beyond my front door, not just inside my lap top.

**I save energy for the weekend so i can spend quality time with lovely man its the trade off we make sometimes when the spoons are there you use them, because they perish quickly its a little boom and bust.

***This is like the confessions of an ex community worker. I spent a lot of time working hard to ensure those furthest from the labour market had a chance...except I and others missed a trick in reality we talked about poeple lacking skills, and edication as barriers we very rarely talked about people who were sick or disabled. Something id like to change. - perhaps i need 2 blogs not sure

Breaking the cycle of depression - well trying to

I intended to be really active on this blog and build up a vibrant and informative collection of information about Fibro - my path of good intentions came to earth with a bump  in late November.

For a variety of reasons, some of it "life stuff" but mostly a recurring and vicious cycle that goes something like this - I convince myself I am feeling better and able to handle a little more. I start off ok and go for it, just as im feeling a little more confident and hopeful BANG I feel under pressure, panic, go into denial, hide, put the im ok mask on (whilst comformt eating, ending up in fibro flair, stop taking care of myself  and generally stop coping) all whilst convincing myself and others (possibly not lovely man) that all is ok.
Its usually my actions not my words that speak volumes - It is often assumed that depression conjours up imagaes of someone being totally unable to function and being mentally unfit to cope in any corcumstance that is not strictly true. I have good and bad days - infact good and bad moments. Im a good actress and can kid myself and others Im ok. Depression is unique to individuals, there are some broad similarities that can come under the heading.

Like i said its my actions that lead up to and include the overwhelming moment i admit how i feel inside - what is actually going on. Im good a medicating my feelings and ignoring the signs so dont notice them - I act out in a way it becomes a game with myself the must not admit its as bad as it is until - with either gentle support or a hit the wall moment when I face the truth.

I have had depression on and off for 20 plus years, I argue it away minimise its importance - "oh I was down" or "I was stressed with work" never really admitting it has had a corrosive affect on me - sometimes I say "I cant cope" but then do little to change it because its the game by saying it out loud i again convince myself that I will get better and it will all gop away and IM FINE

In a way I have been helpless in this - I dont see it coming til its too late, while i talk to my doctor im so busy keeping the mask of coping so firmly in place Im not taken seriously. After all If I dont take it seriously enough then getting help is nigh on impossible. I have been given pills and pretty much sent on my way. The sad joke is that accessing much needed mental health support is so difficult and patchy I dont even consider it as an option.

Added to this is the Taboo that surrounds Depressive Illness - we fear that which we dont understand. The only way to break the cycle to  get to the nub of why and what the triggers are (if there are any) - This is difficult to write about - In part the hiding was about promising to do something but I overstretched myself mentally, the minute I agreed I triggered the fall out and downward spiral began.
The self loathing, fear, panic and anxiety is a horrible place to be. go out and buying chcocolate etc and then hiding the evidence, whilst saying "I dont know why im overwieght i dont eat that much" all of it feeds the illness. You can only change something when you admit its happening and you have no control over it and therefore need help.

I am writing this really because until i address and acknowledge that not only do I have a physical illness that I am working hard to adjust to and live with - I also need to accept that depression plays a significant part in my life. It imapcts fibro just as fibro impacts it.


I am lucky to have my brilliant OH - he said tonight on the phone as i cried at him that WE will tackle it together. The truth though is I wont break this cycle alone, not over night but I can be kind to myself by simply accepting there is a reason the drives it.

I have a few things to do and a few appologies to make but I will try and catch myself when I begin to jump in and promise things i may not be well enough to deliver. I feel pretty rubbish right now but trying hard to find my way back to feeling ok.

The Plan Part 1 - Video Blog "Christmas is coming"

I decided to try a video blog - I have been a bit poorly with a flair up this week so my hands and brain haven't worked very well. My son  tinkered a little with it :) Its Part 1- watching it back again - it does come accross more serious and sad than i was aiming for.

Supportively speaking

There are many things that can help you live and manage Fibromyalgia, some physical adaptations can help, adjusting things to fit around life as it is, not how you want it to be. If you work getting as much help as possible, etc however one of the most overlooked and yet the single biggest source of help is a support network of people. If you don’t have one then this debilitating condition can and does rob you of so much it’s very easy to fall into despair.

I’m extremely lucky I have a fantastic group of friends and loved ones who pick me up when I’m down, give me a hard stare when being foolish and join in the fun when it’s on offer. I feel like I want to make an Oscar speech naming everyone - but if I left one person out and they felt hurt id feel terrible so I won’t. Except to say they know who they are so my lovelies this is dedicated to you

You may be thinking – everyone needs people to turn to sometimes, that’s true but if your life is often reduced to the narrow confines of your house and maybe even your bedroom then being able to express how you feel is vital, having practical help is often a godsend, although I have experienced both sides of the coin. I lived alone (except for the teen) for 18 moths before I moved in with lovely man.

Struggling to cope with even the most basic of tasks can leave you unable to do more than spend the day on the sofa, eating a bowl of cereals and watching crap on TV, tweeting or loosing yourself in (insert game of choice) – what ever, the point im making is without any support, facing a lifetime of pain alone is not one anyone should face. Sometimes family and friends don’t understand, and tell you to get a grip and move on accept it and you will be fine.

I don’t think I can really get across how seeing the same four walls 24/7 at times is demoralising, the “how was your day darling” conversation is grim, do you talk about getting stuck on the stairs, not making it to the loo quick enough or a text telling you they will be late home fills you with dread, not because your worried but because your desperate for a cup of tea and scared you will injure yourself because your hands are bad.

You become adept at plastering a smile on your face, and maybe, just maybe, manage to get dressed 10 minutes before your loved one walks through the door, doing the washing up or starting dinner when your day has mostly been spent in bed or the sofa/floor/chair delete as appropriate.. It’s a game, they know your bad, you know your bad but the I have to be “normal” becomes important. Of course not every day is spent like this, good days are treasured and you pack as much in as you can. You score 10 points for every activity you manage

 Bake/get drunk/see friends/go shopping/drive too fast/make love on the kitchen table/stay up til 10pm.

Having a safe supportive place to go to becomes ever more vital, just admitting to yourself, I feel crap, I cant cope or what do I do when I feel like this is often the only thing keeping you going. No one wants to be a burden or endlessly offload to their loved one or friends, no matter how much they want to know. I’m not saying this is the case in everyone’s life, I am generalising to an extent. For instance, no matter how brilliant LM (Lovely Man) is, on bad days without his support id be a smelly, hungry, desperate, unkempt woman.

At the moment accessing support online is crucial for me; besides LM and the teen (good, for cups of tea) my brilliant group of friends and family are now 50+ miles away. You see, I moved cities in the summer to live with LM  it was a daunting thing, Id lived in the same city for 20 years, had friends I could call on at a moments notice. It was not an easy thing to give up but loving the silly sod meant I was prepared to do it, of course with modern tech I can keep in touch but that simple thing of popping in for a cuppa is sadly lacking.

This is more serious that I usually write, I try and make light of things while being honest, but after a bit of a tough time yesterday (tough as in a row) I sat in the car and sobbed thinking I so need to have a chat, time out to calm down and be with a friend, it bought it home to me in stark reality that I need to do something about it and soon, and how much I have come to rely on the internet support group I’m a member of.

They are funny, thoughtful, inspiring and put up with my wordiness – its not always about Fibro we share the ups and downs of our life, give up our spoons to help anyone who needs it. It’s a relief sometimes to just say it as it is, and not have to explain every nuance of Fibro, to check out and share your worries, fears and pain. So if like me, you have Fibromyalgia and you are struggling to be “normal” but don’t know where to find that support then try looking here:

UK Fibromyalgia – an excellent website full of information and a supportive online forum & support group info
http://www.ukfibromyalgia.com/

Fibromyalgia Association – a UK charity working on behalf of Fibromites, there is a forum and support group info
http://www.fibromyalgia-associationuk.org/

They say a picture speaks a thousand words!!