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9/4/2010 3:00:48 PM
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ChrisC
Posts 205
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Sorry to keep posting so often, but last night I had a new, frightening experience. I have been having "floaters", usually at night when I am more tired, but last night, which was hellish apart from this, I was unable to stop seeing an image of my eye but the iris was bright red and the pupil was black, so I was looking at a sort of bullseye. It was there when I opened my eyes and there when I closed them. Eventually the iris turned green and later still the whole thing disappeared. Due to my "panic" I had to leave the bed and sleep downstairs as my husband had to be up early today as he teaches at weekends. I had had a bad day all round - had to leave a restaurant after ordering (not very nice is it?) and then became nauseous and very sick up until I woke this morning. Since then have tried to pace myself but my left leg and left wrist are casuing problems for me. All this seems to be getting worse, not better! The dry mouth and inability to swallow thing is a real nightmare.
Sorry to moan - and sorry to keep apologising too! I have been apologising to the family for myself all week as I just don't want to be a burden to them. I already have a sister with MS and mymother is having trouble now coping with my problem as well - she is 83 and relied heavily on me.
SORRY!!!
ChrisC (feeling rather low today)
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9/4/2010 3:12:24 PM
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emuna
Posts 240
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Hi Chris,
Post as much as you want if it helps you and you don't need to apologise or feel bad when you do!
I had a pre existing eye problem and since I've had M.E. I've had occasional problems with giant floaters and it's really upsetting.
I've never heard of anything like you describe but nothing would surprise me with this illness.
You need to get your eyes looked at by someone just to make sure they're okay. If you can't get to the hospital at least try your local optician. They can have a look at your eyes and see if there's anything obvious going on.
I do sympathise with all the other stuff you're going through. I'm in a similar but different boat, where I feel like I'm letting people down and have people around me with illnesses who I'd love to help but can't.
I try to just take one day at a time.
Best Wishes.
x
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9/4/2010 4:16:59 PM
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Graham
Posts 325
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You don't need to apologise Chris. That is what the forum is here for.
When I was first ill autumn last year, my eyesight was badly affected for a while. I had a similar sort of thing, in that I would get 'impressions' of things etched on my vision for a while afterwards. Rather like when you look at a bright light, and then close your eyes, except it would last for a few minutes, rather than the normal few seconds. Does that sound like the sort of thing you have experienced?
This symptom only lasted for the first month or so, but I know how scary it can be, I have had various odd things happen with my eyesight at various times.. Apparently visual disturbances can be a symptom of PVF. See here: http://www.postviralfatigue.me.uk/forum/topic171-eye-problems.aspx
edited by Graham on 9/4/2010
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9/4/2010 4:19:28 PM
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ChrisC
Posts 205
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HI Emuna
I did actually see my optician a few weeks ago and my heart was in my mouth but he said everything was very healthy which was a relief. Thanks for your reply, I am trying to take each day as it comes and pace myself (a phrase I have now picked up from reading these forums!). I do hope that doesn't happen again . 
ChrisC x
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9/4/2010 4:23:14 PM
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ChrisC
Posts 205
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Graham, I too find bright lights (even the TV screen) can hurt my eyes at the moment. I have only been ill with this for 3 months so I presume that is what you would call early days. I was also very tired when this happened as I had been up since 4.00 am that day. Never been a good sleeper but my sleep at present doesn't make me feel rested and everyone tells me how tired I look! I wish they wouldn't! LOL. I KNOW!
Thanks for the link!!
ChrisCx
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9/4/2010 4:58:18 PM
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emuna
Posts 240
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Hi Chris,
I've only recently got the hang of pacing, thanks to the physio at the M.E. clinic.
There are different ways of pacing. The way I was taught was to estimate the length of time you can be active (active meaning doing something not too taxing) without there being consequences. Then half it. Be active for the specified length of time and then take a rest. It's supposed to be a proper rest with no TV or radio. Rest times vary depending on what you need so you have to experiment. The physio suggested half an hour for me.
I started off doing a half hour's activity and a half hours rest. I've built it up to three hours activity and half an hours rest. If I find I'm getting too exhausted I cut it back again. I sometimes set an alarm on my mobile phone to remind myself.
I've found this really helps to keep my energy more evenly distributed through the day. It is difficult to do sometimes when I've got family obligations but I do it when I can.
Hope that helps.
Emuna
x
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9/4/2010 5:08:44 PM
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ChrisC
Posts 205
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Thanks Emuna! My problem is that I have always been a very impatient person so this is going to be a real test for me! I had to laugh recently as I told my sister I had bought a fast boil kettle - she said "I would have expected nothing less of you"!  . I am KNOWN for doing three things at once at top speed.
I will try and take your advice, in fact I must! Staring into space for half an hour won't be easy - can you do anything at all? Or do you just think? Could I listen to my iPod for instance? The stress of doing nothing at all for 30 minutes could prove very tricky for me - maybe a bath?
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9/4/2010 5:48:01 PM
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littlerosieposie
Posts 277
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Chris I have to smile because I'm just the same. If I sit for more than a few minutes I get itchy feet and have to find something to do!!! I've learnt that we are exactly the type of people this illness usually gets, kind of ironic that we are now being made to rest (although my rest usually consists of sitting with my daughters watching a bit of kids TV). I have nausea on and off too which isn't nice at all. If you can, a bath sounds like a great way of relaxing to me
For a couple of weeks I've had an awful heavy feeling in my arms & shoulders (not sure how you would describe your wrist & leg pain), so much so today that I feel like I've got someone sitting on my shoulders and weights around my wrists, self inflicted I think due to spening a lot of the week reading. We can't win, I've tried to relax as much as possible this week but get so bored I have to at least read a good book, the result of which is excruciating pain in my arms & shoulders, grrrrrrrrrr!!!!!!
I have trouble with pacing, I have my first CBT session in a week & a half so hopefully that's something they will be able to help me with.
Hope you have a better day tomorrow
Kerri xx
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9/4/2010 7:18:42 PM
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ChrisC
Posts 205
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Kerri, it's not easy is it? But it's getting easier because I literally can't do what I used to do :{ This evening after our meal I sat on the bed for 15 minutes and looked out of the window - I suppose that is resting? But my mind was racing with all the things I have to do and how to do them.
Tomorrow my husband and I (we would like royalty!!) are going to our static caravan to talk about this and how it will affect him as until now our heads have been in the sand. I think we need to talk about it and assume this is what is wrong so that I am not constantly apologising for what I can't help.
As for your arms and shoulders, I get that heavy feeling in my chest, as if someone is sitting on it, and I can't lie on my back as the pressure on my chest gets worse. I have always gone to sleep on my front, face down on the pillow, but can't do that anymore either, so getting comfy in bed is very tricky. Trial and error I guess for this pacing thing.................!! We must keep smiling though (telling myself really).
What is a CBT session?
Chris x
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9/4/2010 7:19:41 PM
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ChrisC
Posts 205
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That last post should have said "sound" like royalty - another problem I have nowadays - using the wrong damn words!!
ChrisC
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9/4/2010 7:28:48 PM
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Init1972
Posts 352
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ChrisC,
Here is something you may like to print and read with your hubby - hope it helps x
On the Action for M.E. website (www.afme.org.uk) I came across this handy print out designed to take to your GP and thought someone else may find it helpful - the link is http://www.afme.org.uk/res/img/resources/GP%20Guide%20Apr%2008.pdf
I printed a copy of this and took to my GP when I felt I was getting no where and asked her to tell me which I had & hadn't had so she had to send me for the ones not yet done - these have since come back "All Clear" but it takes a bit of the leg work out for you hopefully if you are at the early stages and not diagnosed yet - I am now awaiting a throat swab test result in a weeks time and then will push for another referal as the GP is taking too long - all tests could have been done at the same time.....
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9/4/2010 7:55:39 PM
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littlerosieposie
Posts 277
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Don't worry, I can never think of the right word these days (probably why my posts are so long and rambling lol!!!) & don't get me started on my memory - it's shocking!
You're exactly right about your mind racing, my brain goes at a hundred miles an hour but my body is at standstill! Very frustrating!
Only a couple of weeks ago I had a chest x-ray because of that same heavy feeling, it came back normal of course and the heaviness moved on to my arms so I guess it's a case of putting up with it, but knowing that it probably won't be there long-term.
CBT is cognitive behavioural therapy, I don't know much about it yet, only that it helps you to see things in a more positive way. I was referred by my doctor and was very suprised that it took less than 6 weeks for my appointment to come through (was told it could take up to a year!!). Anything's worth a try in my opinion to make this journey a little easier. I've attached a link to give you (and me!) a bit more info about it. http://www.nhs.uk/conditions/cognitive-behavioural-therapy/Pages/Introduction.aspx
Kerri xx
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9/4/2010 8:13:24 PM
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emuna
Posts 240
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Hi Chris and all!
I was that highly driven sort of person too. I had a career, used to rush around a lot. I was the queen of multi-task and I remember going to and from the kitchen (cooking a meal) to computer (writing a report) whilst having the phone held at my neck talking to someone. Then I got this illness and learned to slow down. No choice really. lol!
The physio I saw said I should lie on my bed or sit and put my feet up and just relax - no sound...nothing. But everyone's different and if you need your iPod to relax you might want to listen to something soothing or even a relaxation meditation. (You can find short ones on You Tube.) The whole point is to rest yourself and get your anxiety levels down. I do that exercise where you relax yourself all over by going through areas of your body - you know, feet relax, legs relax, hips relax etc till I've reached my head. I like that cos you start to feel where you're holding tension and let it go.
I've also used the time to learn to meditate. It was difficult at first but you get better at it. I know it wouldn't suit everyone.
Hope that helps.
Emuna
x
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9/4/2010 10:34:36 PM
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ChrisC
Posts 205
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Many thanks to you for that link - I have printed it out and as I am seeing my Doctor on Tuesday, with my husband, it could be very useful indeed. I think I have had most of those tests plus I had a 24 hour ECG which I haven't had the result of yet.
And thanks Kerri for the CBT link - I have had CBT before oddly enough for a phobia I had (HAD!! Good eh? it worked). I just haven't got used to the acronyms on here yet. I too had a chest x-ray because of that heavy feeling - all clear like you.
Emuna, thanks for your advice. I know what you mean about doing all those things at once. I was a company director until a few years ago when I got out due to the enormous pressure of it - just as well as they went bust a couple of years later! But since then we run our own online business from home which I do the admin for so I am always "open"! We sell abroad 24/7 so there is quite a lot of pressure when it is busy. But the good thing about it is that I call my own shots and can just close down if things get out of hand so there is no stress with it other than my own desire to please all of the people all of the time! I will listen to relaxing music - got loads of it :}}
I have a feeling I am going to beat this ....one day!!
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