Here goes, such a long time and SO MUCH has happened in the last few months...where to start!?!
I am feeling surprisingly OK bodily-not much in the way of symptoms today really. I have my good old sound sensitivity but most of the other troublesome stuff seems to have relaxed for the time being at least!
Mentally things have been a HUGE challenge lately though, but thankfully that too has started to lift so all's good! I take thyroid hormone for an underactive thyroid and had allowed my drug regime to slip a bit with the stress of some work issues that have been rumbling on for a long time now. This resulted in me becoming hypothyroid, with the usual dry skin, hair falling out, worsening fatigue, pain and depression.
Depression is such an empty word don't you think? Doesn't really cut it when you start to try to describe how it eats away at your life, your character and your very being. I've had it before, and recovered before, but it's always just a few forgotten thyroid meds away-but I am fortunate to know it's cause and to be able to sort it out within a few short weeks of following my drug regime properly, or altering the dose with the gp.
I can't really say what's happening at work STILL....! Suffice it to say that it is a very uneccesary situation concerning my working hours and advice from Occ.Health. It seems to go from being confusing, troubling and upsetting to MORE confusing, MORE troubling and MORE upsetting!!! I really hope I can get some resolution with it so I can blog some details...maybe it might help someone going through a similar process, you never know. I sincerely hope that nobody is though, it's such a stress.
I'd like to say a warm and VERY HEARTFELT welcome back to my good friend Kerry, who has been absent for such a long time due to ME/CFS which had begun to affect her eyes so badly that being online was no longer possible. She is a fantastically determined and strong lady, who instills great calm and admiration. She writes 'Lemon-aidonline', a beautifully written blog, the link to which is on my bloglist. Thanks to some magical software Kerry is now able to rejoin her friends in cyber-space, and am I pleased to see her!
After stumbling across and reading her blog, then becoming friends, I was inspired to have a crack at blogging myself- so if you wish to protest at my being let loose with a keyboard at all.....Kerry will be pleased to hear from you!!!
Enough for now- take care and take a trip to 'Lemon-aideonline' to say "Hi" to my mentor!!!
Zarla
Showing posts with label friends. Show all posts
Showing posts with label friends. Show all posts
Thursday, 6 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!
Saturday, 15 May 2010
More Precious Moments.....!
Well, I've promised an update to my last post all week. It's taken this long to sort my head and it's antics out - I'm having a few more neurological symptoms than I'm used to. Lots of fun with hearing issues, shock-like reactions to touch and especially unexpected sounds etc etc...you know the drill. Enough of that, it's just not too exciting to write about, I need to work out what's going on before I can share much.
Anyhooo, we spent a wonderful evening with Sylvia on Wednesday-sitting by her fire, eating chocolate biscuits and drinking tea. I gave her a book, and she gave me a couple of things in return...which are the best gifts I could imagine.
Firstly, she has offered us her 'dray' to borrow every summer. This is a large-ish, flat, wooden, 4-wheeled farm cart for Merlin to pull. We can put a top on it, and use it to go for weekends and holidays away, all summer. She will have it back in the winter, when she's at home, cos she uses it then.
I am thrilled! It is something I've ALWAYS wanted to do, travel with horsedrawn vehicle, and now here's my chance. It is a pretty M.E. friendly thing to do too, if I have a companion with me I can lie down, resting or sleeping any time I need to, leaving the driving to someone else, perfect!
I aim to get a peek at it, then get it delivered to where Merlin lives. We'll try him with it, (he may take a few trys to get used to it) then we'll get it home to put a top on and make it habitable. Thank heavens for very handy DIY 'savvy' fathers-in-law I say! If all goes to plan it may be on the road in about 6weeks! I'll keep ya posted!!!
The second gift she gave me, is the feeling that I am moving on, growing and experiencing much more than I thought possible. Her attitude to life is so 'get up and go' and cheerful that it is infectious. I can't help but smile and feel positively energised when I am, or have been around her.
I have begun to think much more like a healthy person, with limitations, again...rather than a permanently sick one, struggling to get through each day (which is mentally where I've been for many more years than I care to think about).
I, and my health have not changed one iota, but if I can maintain the more positive way of thinking it has surely got to make my journey with ME/CFS and the inevitable elephants more bearable. These last couple of weeks have been quite good, despite my worsened symptoms and a few emotional wobbles...I'd have let it all bother me much more before.
This renewed feeling of optimism, and of course, the Dray, are the best gifts I could wish for at this time in my life... (Well, a new bathroom and a semi-naked household slave wouldn't go amiss either, but Sylvia wasn't forthcoming on either of those!!!)
Anyhooo, we spent a wonderful evening with Sylvia on Wednesday-sitting by her fire, eating chocolate biscuits and drinking tea. I gave her a book, and she gave me a couple of things in return...which are the best gifts I could imagine.
Firstly, she has offered us her 'dray' to borrow every summer. This is a large-ish, flat, wooden, 4-wheeled farm cart for Merlin to pull. We can put a top on it, and use it to go for weekends and holidays away, all summer. She will have it back in the winter, when she's at home, cos she uses it then.
I am thrilled! It is something I've ALWAYS wanted to do, travel with horsedrawn vehicle, and now here's my chance. It is a pretty M.E. friendly thing to do too, if I have a companion with me I can lie down, resting or sleeping any time I need to, leaving the driving to someone else, perfect!
I aim to get a peek at it, then get it delivered to where Merlin lives. We'll try him with it, (he may take a few trys to get used to it) then we'll get it home to put a top on and make it habitable. Thank heavens for very handy DIY 'savvy' fathers-in-law I say! If all goes to plan it may be on the road in about 6weeks! I'll keep ya posted!!!
The second gift she gave me, is the feeling that I am moving on, growing and experiencing much more than I thought possible. Her attitude to life is so 'get up and go' and cheerful that it is infectious. I can't help but smile and feel positively energised when I am, or have been around her.
I have begun to think much more like a healthy person, with limitations, again...rather than a permanently sick one, struggling to get through each day (which is mentally where I've been for many more years than I care to think about).
I, and my health have not changed one iota, but if I can maintain the more positive way of thinking it has surely got to make my journey with ME/CFS and the inevitable elephants more bearable. These last couple of weeks have been quite good, despite my worsened symptoms and a few emotional wobbles...I'd have let it all bother me much more before.
This renewed feeling of optimism, and of course, the Dray, are the best gifts I could wish for at this time in my life... (Well, a new bathroom and a semi-naked household slave wouldn't go amiss either, but Sylvia wasn't forthcoming on either of those!!!)
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!
Monday, 19 April 2010
Myself to blame...!
Well, it had to happen didn't it? I only have myself to blame today, the payback for being healthy enough to go out and do something lovely yesterday has me in it's clutches. That elephant is HUGE - he's dancing on me from head to foot this morning....
Enough of him, lets talk about the 'something lovely'.
I own a pretty cute pony and carriage, as you can see he is a very good boy. My hubby and I took him out yesterday for a trot through the most gorgeous countryside and villages. The sun was out, roads were quiet, pony was happy-blissful! Heck, I even got to talk to hubby about some stuff that had been bothering me.... can it get any better?
The sound of hooves on the road, birds in the hedgerow, and distant farm machinery heralding the start of the farmer's busy season, spring had finally got sunny. We had to stop for photographs, people often leap outta cars and snap us as we pass by - or people in the villages smile and greet us. It really is the most wonderful way to bring on payback, that i know.
But, (and there always is one isn't there?) by the time we trotted back into the driveway, I knew I had overdone my day. The dragging feeling had taken my strength, it was all i could do to climb down and lead Merlin away. Hubby sorted him out, fed him and put him away for me and I came home to bed. Which, if I'm honest, is where I've been ever since - but what a way to get payback??!!
I know that people who see me driving the pony, smiling and enjoying myself, cannot comprehend how it affects me when I do this. They don't see how much pain I have, or the muscle weakness/shaking, headaches, neck and spine that is sore to touch, skin sensations, dizziness and treacle-thinking frustration that hits me soon afterwards. Maybe if they did, my life might be easier.
Should we allow our friends to see us when we are bad? I allowed one once, and after a long time had passed (I think she needed recovery time too!!!) she contacted me and we are still friends, but with a new understanding - I know she believes and understands me better now. Should we let our close friends in to see us at our worst-payback? Would this finish or strengthen a friendship? I dunno, and don't really want to experiment, the stakes are too high.
Enough of him, lets talk about the 'something lovely'.
I own a pretty cute pony and carriage, as you can see he is a very good boy. My hubby and I took him out yesterday for a trot through the most gorgeous countryside and villages. The sun was out, roads were quiet, pony was happy-blissful! Heck, I even got to talk to hubby about some stuff that had been bothering me.... can it get any better?
The sound of hooves on the road, birds in the hedgerow, and distant farm machinery heralding the start of the farmer's busy season, spring had finally got sunny. We had to stop for photographs, people often leap outta cars and snap us as we pass by - or people in the villages smile and greet us. It really is the most wonderful way to bring on payback, that i know.
But, (and there always is one isn't there?) by the time we trotted back into the driveway, I knew I had overdone my day. The dragging feeling had taken my strength, it was all i could do to climb down and lead Merlin away. Hubby sorted him out, fed him and put him away for me and I came home to bed. Which, if I'm honest, is where I've been ever since - but what a way to get payback??!!
I know that people who see me driving the pony, smiling and enjoying myself, cannot comprehend how it affects me when I do this. They don't see how much pain I have, or the muscle weakness/shaking, headaches, neck and spine that is sore to touch, skin sensations, dizziness and treacle-thinking frustration that hits me soon afterwards. Maybe if they did, my life might be easier.
Should we allow our friends to see us when we are bad? I allowed one once, and after a long time had passed (I think she needed recovery time too!!!) she contacted me and we are still friends, but with a new understanding - I know she believes and understands me better now. Should we let our close friends in to see us at our worst-payback? Would this finish or strengthen a friendship? I dunno, and don't really want to experiment, the stakes are too high.
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