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#1 uknlv18

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Posted 18 February 2011 - 02:47 PM

Hi everyone,

Feeling more than a bit depressed at the moment so thought I would post on here and see if it cheers me up. As always reading all the great comments on the forums gives me a smile, but it has been a bad week and I am trying to be positive but it is just to hard at the moment.

I was really excited about starting my cake decorating class next month, but my hands have gotten so bad that I can no longer make a fist, the skin is so tight that I can just curl my fingers and barely touch the palm of my hand, and the cramps when I try to do anything detailed is terrible. I drop everything and it is getting so annoying :temper-tantrum: I decided I shouldn't waste the cost of the class as I doubt I will be able to do much and if it is in any way fiddly then forget it. I been trying to make myself get things done during the day this week, I figured it was just being lazy having to lie down in the afternoon every day. Have got a lot done, made 4 batches of Honeycomb, successfully made caramel/toffee, and baked two loaves of french bread and a loaf of rye bread. But boy I can hardly stand up today, soooo tired and am annoyed at myself for being so tired. I really havn't done that much. I just spent the last few hours just sitting in a stupor!

Sigh sorry for the vent, just wanted to tell someone what a horrible week it has been, now I think I am going to go to bed for a week!

Hugs and I hope everyone has a lovely weekend!

Jean

#2 Jeannie McClelland

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Posted 18 February 2011 - 04:03 PM

Sometimes bed is really the best place to be~ Think of it as a 'spa' treatment and take a good book and nice drink (mmmm, hot chocolate & whipped cream!), some of your caramels, and just rest and luxuriate.

We're our own worst enemies sometimes. I'm slowly (very slowly) learning not to push myself beyond my limits and not to feel guilty when I just can't summon up the energy to do something that used to be such a piece of cake. So take it from me, be kind to yourself and relax!

Here are a couple of spoons to dish up some feel-better. Did you notice that one of them is also teflon-coated for stirring your caramels?! :spoon: :spoon:

Warm wishes,
Jeannie McClelland
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#3 Joelf

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Posted 18 February 2011 - 04:04 PM

Oh, Jean, I'm really sorry to hear that you've had such a bad week. :sorry:

I can sympathise; it's so frustrating and infuriating when you desperately want to accomplish something and your body just won't let you! :emoticon-crying-kleenex: It's also a shame that you won't be able to do your cake decorating class when you were so looking forward to it but to be honest if I'd managed to bake all those lovely things that you've done, I'd be feeling pretty pleased with myself (and amazed; I'm not nearly such a good cook as you! ;) ). They do sound really yummy! :yes:

Please don't feel upset at feeling tired, it's quite understandable and I tend to spend a lot of my life in a sort of stupor as well; so that's nothing to feel ashamed of, either! ;) :lol:

To paraphrase Scarlett O'Hara in "Gone With The Wind"...tomorrow is another day (or week) and hopefully it will be better for you than this past week has been.

I hope you're able to enjoy your weekend. :emoticon-hug:

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#4 queenie

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Posted 18 February 2011 - 05:45 PM

Hi Jean,

So sorry to hear you are feeling so rotten :emoticon-crying-kleenex:
I too struggle to know were my limit is and am constantly going past it then ending up in bed for days on end totally exhausted :sickly:

Hope you are feeling better soon probably a few days time but just wanted to let you know :emoticons-i-care:

Hugs and loves :emoticon-hug: and a few flowers to cheer you up :flowers:

Queenie x

#5 uknlv18

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Posted 18 February 2011 - 06:13 PM

Thanks you everyone, I am feeling better, my pity parties don't last long and a big :emoticons-group-hug: to you all for your kind posts. I put some John Denver on (I know Im a nerd hehe) and had a good cry :emoticon-crying-kleenex: and now I am doing all right. I have decided to make some apple pie tomorrow, and take a nap in the afternoon!

Have ordered some covers for my crochet needles so hopefully doing something different will give me the boost I need.

Cheers
Jean

#6 Amanda Thorpe

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Posted 18 February 2011 - 06:20 PM

Hello Jean

You are going to have to accept that there are times when you have to go to bed and sleep, there's no other way to deal with chronic fatigue. Trying to ignore it or push through it will only come back and bite you on the butt. :emoticon-bang-head: It is important to learn your limits and live within them, we may not want limits but they're something we have to now accommodate thanks to scleroderma:

Mild to extreme fatigue is a common symptom of scleroderma. It affects your daily activities and overall quality of life. Fatigue is not in your head. It is caused by physiological problems as well as psychological problems associated with the disease or other symptoms of the disease

I used to make novelty cakes and loved doing it, going to a cake decorating supply shop was so exciting! Now I have sclerodactyly hands and since being ill have only made 2 novelty cakes and that with assistance. I may not be able to do it without help but at least I was able to do it.

Take care and keep posting.
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#7 uknlv18

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Posted 24 February 2011 - 03:42 PM

Hi Everyone,

Still having a bit of a bad time with things lately, not coping well I guess is the best way to put it. And Amanda you were right it has come to bite me in the rear, have spent most of this week being really sick and sleeping all the time :sick2:

I have started doing some excersise this week, it is a DVD that is designed for people with disabilities and is quite good. Was doing good until yesterday when a bout of dizziness caused me to fall down the stairs. Sigh big goose egg on my left knee and ankle and a lot more pain. :blink: Nothing broken and no major damage so that is a good thing!

I keep seeing everyone giving me and other people spoons so finally decided to see what that was all about, and the story was so wonderful and it made me cry. But I am going to show it to my family and friends here as they know I have something wrong but no idea what it is and what it is like. I know they get upset when I can not go and do things like everyone else, and I think they think I am just being awkward.

On the up side I have lost 5 more pounds in the last two weeks, and the weekend is soon here so I will have my hubby for company for two whole days :woohoo: I have been trying to be British and the stiff upper lip, but it is trembling a lot lately, but I am finally working my way back out, perhaps the fall down the stairs knocked some sense into me and has snapped me out of my funk! So now it is time to wave my magic wand :fairy: and get back on track, and I think the spoon story will help a lot with me feeling so guilty about not being able to do what I used to be able to do!

Hope everyone has a relatively pain free week!

Cheers
Jean

#8 Amanda Thorpe

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Posted 24 February 2011 - 04:07 PM

Hello Jean

Do you think you should have the doctor look at your knee, if you haven't already, oh yeah and the bout of dizzyness?

5lb weight loss in one week...show off!! Not that I am jealous of course... :angry:

Here! Here! to a pain free week!! :emoticons-line-dance:
Amanda Thorpe
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#9 Joelf

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Posted 24 February 2011 - 04:23 PM

Hi Jean,

Goodness me, losing 5lbs in a week.......I'm feeling sick as a parrot with envy!! ;) :lol:

Sorry about your knee though; it must be very painful. I usually find with tumbles like that you never realise how much of you is hurting until the next day when everything stiffens up and you ache in places you never knew you had!! :sorry:

Here's a couple of spoons to help you over the next few days! :spoon: :spoon:

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#10 Jeannie McClelland

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Posted 24 February 2011 - 05:56 PM

Hi Jean,

More spoons from me too: :spoon: :spoon: :spoon:

My dad, in his latter years, had a real gait/balance problem due to Parkinson's and stairs were particularly difficult He did 2 things that really helped. First he had a railing on both sides of the stairs and secondly he had a good stout nylon rope, about 2cm in diameter, tied into several supports of the railings, about 40-50cm apart and looping down slightly. When he couldn't grab or hang onto the railing, he could use the rope, and it was especially helpful in going up the stairs. Having that rig on both sides of the stairs saved him on numerous occasions. Maybe such a set-up would be useful for you too. And if the dizziness continues, think about a bath bench and grab rails in the bathroom too. Even if you don't need 'em, grab rails are great places to dry socks and undies. :lol:
Jeannie McClelland
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#11 dot

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Posted 25 February 2011 - 04:38 PM

Hi Jean.

Hope things are improving for you now. Having chronic symptoms gets on top of me too at times. The worst thing for me is chronic fatigue, which I have had for 5 years. It has wrecked my life because everything I most enjoyed before was activity-based - running, hillwalking etc. I have tried to develop non-strenuous interests as a substitute but it isn't the same and even non-strenuous things are beyond me at times. The rheumatologists I see are reluctant to attribute the fatigue to scleroderma because I only have the "limited" variant or CREST.

Anyway, I hope you are feeling better. I really identified with the spoon theory too - I remembered it especially when I had to sit down on the bed and rest one morning recently after the exertion(!) of having my shower and getting dressed! When the fatigue is bad I hurt all over - even my clothes seem to hurt me.

I haven't posted here for a while but I frequently check in and read what's going on. I've never met anybody else with this disorder we share, so you and all the others on this forum are very important people to me.

Good wishes,

Dot

#12 Jeannie McClelland

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Posted 25 February 2011 - 05:01 PM

Dot, welcome to the Forum. I hope you'll post often and let us get to know you.

I am so glad you posted in this thread. There is a fair amount about depression and autoimmune/chronic illnesses but I don't think there is enough research into the fatigue that so many of us suffer so profoundly. The one article I refer people to time and again is Cancer Related Fatigue, because the suggestions in it are so sensible and helpful. I would bet most of us would probably come down on the side of scleroderma being responsible for your fatigue, be it limited or not. -_-

Best wishes and once again, welcome.
Jeannie McClelland
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