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!
Showing posts with label muscle weakness. Show all posts
Showing posts with label muscle weakness. Show all posts
Friday, 17 September 2010
Thursday, 9 September 2010
Free Food and No Energy!
I love to forage for free, wild food. Just now is the forager's busy season, with Elderberries, Blackberries, Crabapples, Rosehips, Mushrooms, Damsons, Plums, Sloes, Rowanberries and Hawthorn Berries, not to mention the usual staples of this time of year such as Pears, Rhubarb, Apples and all the veg from our plot and that given by friends.
The only problem with all this foraging is that you have to DO SOMETHING with it all once you have it home! Well, I have managed to make some Damson Jam and Apple and Blackberry Cheese over the last couple of weeks, but that's nothing to what I want to be doing.
In my kitchen I have Rhubarb stalks, Plums and Damsons from our garden and a huge basket of Pears which were kindly donated to us. I need to use them.
Yesterday I had a day to myself, nobody else about ALL DAY-a real and rare treat for me! I had made plans to make some pear cakes, fruit vodka, plum jam, and then maybe relax with my rag rugging as I've got to finish a little rug for a friend.
ME STRIKES AGAIN! I got up and stripped my bed, then I began to feel the familiar 'full of rocks' heaviness creeping up on me. Poo, Bum and Pants!!!
The day went like this...-10 minutes upright, resulting in feeling so weak and ill that even I couldn't be stubborn enough to continue. Return to my bed or the sofa, close my eyes and wait it out till I feel a little better. Another 10 minutes up and repeat the same monotonous routine over and over. I was sooooo frustrated not to have achieved a fraction of what I wanted to do. I managed to make pear cakes but it took most of the day, working a little at a time and falling back onto the sofa to rest in between.
Early afternoon I gave up trying and retired to the bed to sleep properly, which did help I am pleased to say. My evening got a little more energetic, and I managed a nice cup of tea with my old friend Sylvia (my traveller friend from earlier blogs).
But I am still frustrated at my lack of ability again, I know I sound like a cracked record, but that's the nature of the illness we face.... it's a monotonous and relentless slog against odds which sometimes seem very stacked against us.
Yes, dear reader, I'm having a tough time again and a grumble does us all good...... I just had mine, feel free to leave me yours!
Fair's fair!
The only problem with all this foraging is that you have to DO SOMETHING with it all once you have it home! Well, I have managed to make some Damson Jam and Apple and Blackberry Cheese over the last couple of weeks, but that's nothing to what I want to be doing.
In my kitchen I have Rhubarb stalks, Plums and Damsons from our garden and a huge basket of Pears which were kindly donated to us. I need to use them.
Yesterday I had a day to myself, nobody else about ALL DAY-a real and rare treat for me! I had made plans to make some pear cakes, fruit vodka, plum jam, and then maybe relax with my rag rugging as I've got to finish a little rug for a friend.
ME STRIKES AGAIN! I got up and stripped my bed, then I began to feel the familiar 'full of rocks' heaviness creeping up on me. Poo, Bum and Pants!!!
The day went like this...-10 minutes upright, resulting in feeling so weak and ill that even I couldn't be stubborn enough to continue. Return to my bed or the sofa, close my eyes and wait it out till I feel a little better. Another 10 minutes up and repeat the same monotonous routine over and over. I was sooooo frustrated not to have achieved a fraction of what I wanted to do. I managed to make pear cakes but it took most of the day, working a little at a time and falling back onto the sofa to rest in between.
Early afternoon I gave up trying and retired to the bed to sleep properly, which did help I am pleased to say. My evening got a little more energetic, and I managed a nice cup of tea with my old friend Sylvia (my traveller friend from earlier blogs).
But I am still frustrated at my lack of ability again, I know I sound like a cracked record, but that's the nature of the illness we face.... it's a monotonous and relentless slog against odds which sometimes seem very stacked against us.
Yes, dear reader, I'm having a tough time again and a grumble does us all good...... I just had mine, feel free to leave me yours!
Fair's fair!
Thursday, 26 August 2010
Thought Stream
Hey it seems like AGES since I wrote anything, it's not been through choice, but life has been keeping me busy, with not much cognitive 'oomph' to spare! I work just two days a week at the moment, and have been trying to keep up with family life and demands over the school holidays.
There is a pretty stressful work situation that has been brewing nicely for the last few months, and is now really taking it's toll on my head and it's tendency to 'jam'. There have been lots of anxious times, and some stressful encounters to try to get through. I am hoping that it will be nearer to it's conclusion next week. Fingers crossed for me! (Cos, if it goes on much longer I dunno if I will have the 'mojo' to keep up with it!)
My son is now 16! I am so proud of him, and the obstacles he overcomes- life has it's challenges for him too. He gained 7 GCSE's and is now looking forward to starting at college soon. He is heavily into horses and riding so he's off to do a horse care course.
Pigs are my husband's latest obsession, or more accurately two Kune Kune weaners (FYI- this is what they're called before they have their first litter) called Agnes and Winnie.
They are both quite nice girls, very affectionate and love a good belly scratch! They eat ALL my non-meat kitchen and garden scraps and are so clean I can't believe it! I have never come across such inoffensive creatures in my life. Think we humans could take a leaf outta their book!
But, having said that, have you ever tried to give a weaner an injection (shot!)? They're not quite so inoffensive then!
When I say obsession, I mean it! Hubby has turned into a 'pig-bore', he even has a webcam set up in their shed so he can see what they're up to 24/7!!! I think there has to be some kind of law against pig-cam, but he is LOVING it! Just looks like a lot of snoring, snoozing and scratching to me though!!! Perhaps that's what he likes about them!??!!
There is no point to this post, just a waffle- sorry if you were on the edge of your seat waiting for the deep and meaningful! It's just not going to happen today!
Health wise, (and I suppose we always have something to say on the matter hey!?) I am struggling with what I suspect will turn out to be Interstitial Cystitis. If you are with me on this one you'll know just what I'm talking about.....! My GP was going to give me something to help with it, but I am heavily against taking drugs until I have tried all other avenues, so I'll rethink this after giving some other lifestyle and diet changes a try first.
My stamina is low, my heartrate high, my head full of concrete and my body heavy, (Well, I suppose the 'head-concrete doesn't help.....!) I'm feeling just a teensy weensy bit frustrated as I'd really like to be boiling beetroots for pickling and making damson jam. But, instead of this I'm laying as flat as possible, TRYING to rest and type...!
I'm having an "oh woe is me" moment, no apologies! I know it'll pass and lets face it, we all have them!
There is a pretty stressful work situation that has been brewing nicely for the last few months, and is now really taking it's toll on my head and it's tendency to 'jam'. There have been lots of anxious times, and some stressful encounters to try to get through. I am hoping that it will be nearer to it's conclusion next week. Fingers crossed for me! (Cos, if it goes on much longer I dunno if I will have the 'mojo' to keep up with it!)
My son is now 16! I am so proud of him, and the obstacles he overcomes- life has it's challenges for him too. He gained 7 GCSE's and is now looking forward to starting at college soon. He is heavily into horses and riding so he's off to do a horse care course.
Pigs are my husband's latest obsession, or more accurately two Kune Kune weaners (FYI- this is what they're called before they have their first litter) called Agnes and Winnie.
They are both quite nice girls, very affectionate and love a good belly scratch! They eat ALL my non-meat kitchen and garden scraps and are so clean I can't believe it! I have never come across such inoffensive creatures in my life. Think we humans could take a leaf outta their book!
But, having said that, have you ever tried to give a weaner an injection (shot!)? They're not quite so inoffensive then!
When I say obsession, I mean it! Hubby has turned into a 'pig-bore', he even has a webcam set up in their shed so he can see what they're up to 24/7!!! I think there has to be some kind of law against pig-cam, but he is LOVING it! Just looks like a lot of snoring, snoozing and scratching to me though!!! Perhaps that's what he likes about them!??!!
There is no point to this post, just a waffle- sorry if you were on the edge of your seat waiting for the deep and meaningful! It's just not going to happen today!
Health wise, (and I suppose we always have something to say on the matter hey!?) I am struggling with what I suspect will turn out to be Interstitial Cystitis. If you are with me on this one you'll know just what I'm talking about.....! My GP was going to give me something to help with it, but I am heavily against taking drugs until I have tried all other avenues, so I'll rethink this after giving some other lifestyle and diet changes a try first.
My stamina is low, my heartrate high, my head full of concrete and my body heavy, (Well, I suppose the 'head-concrete doesn't help.....!) I'm feeling just a teensy weensy bit frustrated as I'd really like to be boiling beetroots for pickling and making damson jam. But, instead of this I'm laying as flat as possible, TRYING to rest and type...!
I'm having an "oh woe is me" moment, no apologies! I know it'll pass and lets face it, we all have them!
Saturday, 31 July 2010
Reality check!
I love to blog about doing lovely things, as in the last post, 'I Follow Humbly'. This is unfortunately not always the reality of life however. I managed that Lark Rise trip through careful planning and taking it easy in the days leading up to it, so that I could enjoy it. Thankfully it paid off and I had a great time.
Since that trip things have conspired to bring me back to earth with a 'thump'! It is sometimes my own doing, cos I push myself to my limits (and sometimes beyond em) but this time I am largely blameless!
Work has been more than usually stressful this last couple of months, building nicely into a semi permanent 'teetering on the edge of crash' state! I find I am unable to sort a particularly knotty issue out, caused by circumstances out of my control, all getting a bit much with this illness that hates stress.
Since that trip things have conspired to bring me back to earth with a 'thump'! It is sometimes my own doing, cos I push myself to my limits (and sometimes beyond em) but this time I am largely blameless!
Work has been more than usually stressful this last couple of months, building nicely into a semi permanent 'teetering on the edge of crash' state! I find I am unable to sort a particularly knotty issue out, caused by circumstances out of my control, all getting a bit much with this illness that hates stress.
Whilst my energy levels have been worse there are the usual culprits that appear when things aren't going so well. That bone crushing, aching tiredness and weakness that can stop you in your tracks sometimes- the body that's suddenly too heavy to take another step, and a brain that might be able to do the Times crossword one minute but can't find the words I need to complete a sentence the next, (sorry, that's not strictly true-I don't think I could do the Times crossword even when well!) Hearing sensitivities, tremors, muscle spasms and brain-fuzz of the most debilitating 'I can't remember what i am supposed to be saying' kind are also here and look like they're staying!
I am prone to muscle spasms in all sorts of odd places but my lower tummy has been really troublesome just lately, with horribly painful spasms and tension in the area around my pelvic floor muscles. I just cant relax them at all, night or day. Night is worse as lying down seems to make the pain more intense...no sleep for days now! Is this just my own brand of ME/CFS or do others get similar symptoms too?
Things aren't always good in anyone's life, they're sometimes very hard, painful, lonely and frustrating but I have an unshakeable faith that things do change, and hopefully for the better.
Will someone remind me of this please, when I'm mired in pain, fatigue and a basement low mood!? It's sure to happen, not as yet as I am definitely upbeat, but, as they say, "it's not over till the fat lady sings!" (But, don't worry, I'M keeping MY mouth firmly glued shut!!!!!)
Sunday, 13 June 2010
Gorillas Don't Like Pasta Sauce.
A slow start today, mostly cos my body had a few issues of it's own first thing. There seemed to have been some kind of stampede whilst I slept, and everything in it had run over me, or, my arms to be exact!
My arms are always the first to go... weak and very sore. It's strange but they seem to be most painful in one small spot on the front of each bicep. Hubby (henceforth known as Mr.H as it's easier to type) thinks I'm bonkers when I complain that a cup of tea is too heavy, and feels like I'm lifting a bucket to my lips!
I'm blogging from my bed, my typing arm propped up on Mr.H's toy stuffed gorilla! He's a great shape, hugs your arm and is so comfy! Slightly bizarre, but comfy! I read a post by my friend Kerry, (Lemon-aid online) where she extolls the virtues of her many pillows and cushions, and I NEARLY confessed my love for the hairy, cuddly toy that I use to prop my sore/weak arms up with-but I didn't! (For those who are unsure, I am still talking about the gorilla! Mr.H is kinda cuddly, but there's not so much hair there these days!!!)
After spending a few hours in bed, I'm off to organise dinner. Mr.H is busy somewhere, so I hope my son can whip-up a quick pasta sauce and meatballs-I'm sure he can! I'd volunteer, but I'm sure it's the kind of job I need arms for, and I don't want to get pasta sauce on my gorilla!
My arms are always the first to go... weak and very sore. It's strange but they seem to be most painful in one small spot on the front of each bicep. Hubby (henceforth known as Mr.H as it's easier to type) thinks I'm bonkers when I complain that a cup of tea is too heavy, and feels like I'm lifting a bucket to my lips!
I'm blogging from my bed, my typing arm propped up on Mr.H's toy stuffed gorilla! He's a great shape, hugs your arm and is so comfy! Slightly bizarre, but comfy! I read a post by my friend Kerry, (Lemon-aid online) where she extolls the virtues of her many pillows and cushions, and I NEARLY confessed my love for the hairy, cuddly toy that I use to prop my sore/weak arms up with-but I didn't! (For those who are unsure, I am still talking about the gorilla! Mr.H is kinda cuddly, but there's not so much hair there these days!!!)
After spending a few hours in bed, I'm off to organise dinner. Mr.H is busy somewhere, so I hope my son can whip-up a quick pasta sauce and meatballs-I'm sure he can! I'd volunteer, but I'm sure it's the kind of job I need arms for, and I don't want to get pasta sauce on my gorilla!
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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