I haven't really blogged about this much, but I have been going through a phased return to work after an ME/CFS crash a while ago. It has been fraught with pitfalls and disturbing situations, but I hope we are now someway to sorting all this out and sanity resuming! I am seriously hoping for a reduction in the stress that I have had to endure over the last, erm, well...... 11months all in all!
What I was striving for was a return to full time hours. The powers that be were not very keen to let me do this, and I don't think it has much to do with their concern for my health!
It's immensely hard to have such a huge knock to your health-an ME/CFS crash, and to have to try to make it back to work. Then to have to go through situations which question your work, your honesty about your health and to have to endure comments which are at best discriminatory is really piling on the pressure. All the pay, conditions and decisions are taken out of your hands and the only one who knows how you and your body is coping -you- is not consulted! All this with the weight of an elephant in your holdall!
When I look at it like this I think it's a small miracle that I have managed any recovery from the 'crash of '09' at all! In my brain-fogged state it is often easy to sit and ponder why this crash has been so much more difficult to return from, and to assume that it is because of a worsening of my ME/CFS or even (God forbid!) that I'm not a spring chicken any more!
This illness is so complicated and reactive to stress. This crash and subsequent climb back have been my longest and most difficult to date, due in no small part to the 'stressful' feel of the process specifically put in place to aid and enable my return to work. CRAZY!
I am sure however, that this process goes quite smoothly for some people, and if all advice from GP's or Occupational Health is respected by the bosses it can have great results. Unfortunately it is the patient/employee who suffers when this does not happen. I can only speak about the process as it was for me.
It would be easy (but not advisable) for me to point fingers of blame and resort to a bit of dirt-dishing, but I won't. I want only what I have wanted all along, for my elephant and I to return to work and to be able to just get on with the job I love to the best of 'our' ability.
Showing posts with label support. Show all posts
Showing posts with label support. Show all posts
Saturday, 15 January 2011
Friday, 17 September 2010
Support-the act of bearing the weight of or strengthening
Firstly I NEED to say that none of what follows in any way refers to you, my friends. You are my support, my outlet and for all this I thank you.
I fly through my world very much alone. Most of my close or extended family are somewhat less than supportive, the subject of my health is rarely discussed or acknowledged. If I do venture to talk about some aspect of it, maybe because it is particularly difficult or worrying, then I'm met with almost universal indifference.
I know that it could be an attempt at denial by people who love me, but it never feels anything other than rude, hurtful and demeaning. I am left with a nagging doubt about how much they actually care. So, as a result, over the years I have learnt not to venture much information, as just keeping it to yourself is safer than trusting that others might acknowledge, and when they don't it hurts too much to keep putting yourself through.
Like sitting at the top of a steep hill, on a bike. Do you risk something, be a little brave and trust that if you ride down the brakes will stop you, or do you get off and walk, keeping things safe, cos the brakes didn't work last time, or the time before, and you got hurt.
Not the best analogy ever, but hey, sorry, ME-brain!
This is tough enough when it's the people you see occasionally, high days and holidays, but what about those you live with, the closest family of all?
I have been struggling for 10 years, trying to make my hubby aware of my illness and symptoms. You'd think he had a handle on it a little by now, but it appears not. Not only does he leave housework etc for days/weeks, till whatever has put me in bed has passed and I'm vertical (however wobbly!) again, but most weekends he sends me out to do things, the latest being to manhandle and collect 2 sacks of pig food! This is just typical behaviour, by no means the only examples dear reader!
I try to say what is happening to me, what I'm experiencing, especially on the days things are teetering and I really need to take extra care. I try to make it 'user friendly' and relate to things he might have an understanding of. Such as my almost perfected 'my muscles have no power today, lifting that mug of tea feels like it's a bucket'! I know, I know, genius!
Over the years I have come sadly, and reluctantly to the conclusion that he isn't really bothered. I reached this conclusion by the same method as we were all diagnosed, by a process of excluding all other causes first!
I tried the 'he's scared', no go.... then there's the 'he doesn't understand cos it's such a hard thing to get your head around' no go, after all these years and lots of explaining. I've comforted myself with the 'he's just hiding his head in the sand and hoping it'll all go away' no go....10 years, total indifference when I, or any of my friends speak about it has lead me to diagnose..............
A severe case of U.M.S. (Unsupportive Male Syndrome) with tendencies towards CCL (Couldn't Care Less)!
Not an easy diagnosis for us spouse's to live with but I'm doing my best!
I fly through my world very much alone. Most of my close or extended family are somewhat less than supportive, the subject of my health is rarely discussed or acknowledged. If I do venture to talk about some aspect of it, maybe because it is particularly difficult or worrying, then I'm met with almost universal indifference.
I know that it could be an attempt at denial by people who love me, but it never feels anything other than rude, hurtful and demeaning. I am left with a nagging doubt about how much they actually care. So, as a result, over the years I have learnt not to venture much information, as just keeping it to yourself is safer than trusting that others might acknowledge, and when they don't it hurts too much to keep putting yourself through.
Like sitting at the top of a steep hill, on a bike. Do you risk something, be a little brave and trust that if you ride down the brakes will stop you, or do you get off and walk, keeping things safe, cos the brakes didn't work last time, or the time before, and you got hurt.
Not the best analogy ever, but hey, sorry, ME-brain!
This is tough enough when it's the people you see occasionally, high days and holidays, but what about those you live with, the closest family of all?
I have been struggling for 10 years, trying to make my hubby aware of my illness and symptoms. You'd think he had a handle on it a little by now, but it appears not. Not only does he leave housework etc for days/weeks, till whatever has put me in bed has passed and I'm vertical (however wobbly!) again, but most weekends he sends me out to do things, the latest being to manhandle and collect 2 sacks of pig food! This is just typical behaviour, by no means the only examples dear reader!
I try to say what is happening to me, what I'm experiencing, especially on the days things are teetering and I really need to take extra care. I try to make it 'user friendly' and relate to things he might have an understanding of. Such as my almost perfected 'my muscles have no power today, lifting that mug of tea feels like it's a bucket'! I know, I know, genius!
Over the years I have come sadly, and reluctantly to the conclusion that he isn't really bothered. I reached this conclusion by the same method as we were all diagnosed, by a process of excluding all other causes first!
I tried the 'he's scared', no go.... then there's the 'he doesn't understand cos it's such a hard thing to get your head around' no go, after all these years and lots of explaining. I've comforted myself with the 'he's just hiding his head in the sand and hoping it'll all go away' no go....10 years, total indifference when I, or any of my friends speak about it has lead me to diagnose..............
A severe case of U.M.S. (Unsupportive Male Syndrome) with tendencies towards CCL (Couldn't Care Less)!
Not an easy diagnosis for us spouse's to live with but I'm doing my best!
Monday, 10 May 2010
Nothing so precious as........
I am so lucky, I have met, and am meeting some pretty inspirational and special people just lately. I get so much joy from getting to know people, their stories and their friendship. Simple things please simple minds i suppose!!!
Honestly, there is no treasure, no luxury, no art, jewellery, product or gift that can come even a close second to the pleasure I get from simply sharing time with people, and I know some pretty wonderful ones!
There are the enduring friends I have, (let me take you back to my last post) they are special, each and every one. There are the friends I can be M.E./CFS comfy with and the ones I still try to hide some of it from.
There are the new friends I have, from the local support group. There is a large community of 'cyber' friends out there, who all appear at my 'virtual front door', the laptop screen! There are the friends I have through pony and carriage driving and many more from many different walks of life. All superb and wonderful people who I am privileged to know.
I want to tell you about one I have begun to get to know just recently, a special lady in her own category - Sylvia!
Sylvia is a lovely lady who is intelligent, quick, funny, honest and sincere. She is a traveller, still using a horse drawn gypsy caravan and her horse 'Diamond' to get around Britain. She travels for most of the year, stopping off with friends along the way.
I met her last autumn, and then saw her again a couple of weeks ago-I'm having such a blast getting to know her before she moves on again. We have spent a couple of evenings sitting by the fire, drinking tea and just talking about well, I dunno, but it was heavenly.
She has such a different lifestyle, and I admit it, I'm more than ferociously jealous! I am a simple girl at heart, a forager who loves to live simply. But I have to allow my health to take the lead on my lifestyle rather more than I'm happy with but hey! I am still able to lead a great life, just slower and much more cautiously than before, so you won't hear me complaining! (I'll just do it quietly!!!)
On Saturday Sylvia came out with me and my pony and carriage (see my photo on the post 'Myself to Blame') and fell in love with him, he was very good that day! I had the best time, she is such great fun! We talked and talked about stuff that is close to my heart, and hers - horses! Then, back to our yurt for toast and fresh scrambled eggs, laid by my 'girls', she loved it!
I could go on all day, but, I would never have begun driving horses and ponies if it weren't for ME/CFS, so there's a fair chance I would never have met Sylvia, or many of the intensely wonderful people I know now. So for this alone I need to give a huge hug to my 'elephant' when I can get my arms round him (he is a bit big at the moment, and my arms ache!).
I hope that all of us have as pleasant and relaxed a time as possible in this Awareness Week. I'm not sure todays post will do much for awareness, but I hope, if you're new here, you check out some of the previous ones!
Before I go, a warm welcome Jessica, thanks for following over from Facebook! Great to see you!
Take care all,
Zarla
xxx
Wednesday, 5 May 2010
"I understand...."
My elephant has lost a few pounds this morning I think, still sitting on my shoulders, but lighter than it has been for a while. The first thing to recover, when I notice I feel better, is my horrible, down in the dumps moodiness.
"Hooray!" I hear my friends cry in chorus! For, tis they who bear the brunt of my 'sharing the joys of ME/CFS!' (Otherwise commonly known as, 'moaning on' about the pain and my limitations etc!) They are a stalwart group, who's support is the best cushion I could wish for.
I am blessed with many friends who support me in many ways, some willingly and some I think who are totally unaware of what they do and how much I rely on them.
At the weekend it had been arranged that my friend, her partner and two children were coming to lunch. I was having a particularly bad time of it, and anyone else, I would have cancelled immediately. I was, if I'm honest, toying with cancelling them, but am so glad I didn't.
They arrive and slot into our home. And, after initial chats and a cuppa, my friend took over in the kitchen, cooking for 7! She even shopped for it cos she knows that's something I won't have been able to do.
She cooks, serves (waiting on me especially!), and arranges the clearing away operations. The men being 'press ganged' into kitchen tidying and dishwasher 'feeding' afterwards. Then, she scoops me up, with a caring "Let's go get you laid down somewhere." and takes me to the yurt.
She then lights the fire, makes tea, and puts up with a very tired and worn down me. We talk a little, sit quietly a little, laugh a little. She should be bottled and given out on prescription!
And then, after all this, I have to ask them to leave as I could no longer manage to be there, laying down or otherwise. Without any fuss, she tidies away the tea things, gathers up her family, and is gone. She texts me from the car ....
"Thanks for a nice afternoon, don't feel bad about needing to go to bed. I understand. Take care."
Need I say more! All that and she still thanks ME for a nice afternoon! She has no idea that single handedly she has (albeit very caringly, and gently) shaken me up and turned my black mood around, instead I am now counting my blessings with this illness.
I have such healing and comforting relationships in my life, due in no small part to ME/CFS and the elephant I carry. Ok, now I'm in serious danger of getting schmaltzy and sentimental, so I'm off!
But, if ever my friend reads this, I mean EVERY word and more! You are truly one in a million!
"Hooray!" I hear my friends cry in chorus! For, tis they who bear the brunt of my 'sharing the joys of ME/CFS!' (Otherwise commonly known as, 'moaning on' about the pain and my limitations etc!) They are a stalwart group, who's support is the best cushion I could wish for.
I am blessed with many friends who support me in many ways, some willingly and some I think who are totally unaware of what they do and how much I rely on them.
At the weekend it had been arranged that my friend, her partner and two children were coming to lunch. I was having a particularly bad time of it, and anyone else, I would have cancelled immediately. I was, if I'm honest, toying with cancelling them, but am so glad I didn't.
They arrive and slot into our home. And, after initial chats and a cuppa, my friend took over in the kitchen, cooking for 7! She even shopped for it cos she knows that's something I won't have been able to do.
She cooks, serves (waiting on me especially!), and arranges the clearing away operations. The men being 'press ganged' into kitchen tidying and dishwasher 'feeding' afterwards. Then, she scoops me up, with a caring "Let's go get you laid down somewhere." and takes me to the yurt.
She then lights the fire, makes tea, and puts up with a very tired and worn down me. We talk a little, sit quietly a little, laugh a little. She should be bottled and given out on prescription!
And then, after all this, I have to ask them to leave as I could no longer manage to be there, laying down or otherwise. Without any fuss, she tidies away the tea things, gathers up her family, and is gone. She texts me from the car ....
"Thanks for a nice afternoon, don't feel bad about needing to go to bed. I understand. Take care."
Need I say more! All that and she still thanks ME for a nice afternoon! She has no idea that single handedly she has (albeit very caringly, and gently) shaken me up and turned my black mood around, instead I am now counting my blessings with this illness.
I have such healing and comforting relationships in my life, due in no small part to ME/CFS and the elephant I carry. Ok, now I'm in serious danger of getting schmaltzy and sentimental, so I'm off!
But, if ever my friend reads this, I mean EVERY word and more! You are truly one in a million!
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