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Jul 14th, 2015, 21:47 PM  
AliCat
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I used to work full-time after I graduated 4 years ago but then fibro/ME struck just 5 months later. When I returned to work after 3 months off sick, I reduced to 3 shifts a week. I did this until January this year when I got the flu. I had such a bad flare that I couldn't work 2 shifts consecutively. So I reduced again to just 2 shifts a week, thankfully split up. My boss is brilliant and always accommodates my condition. I don't have to work nights either and only do the late shift so I don't have to be up too early. I was so worried back in January that I'd have to give up work completely.
What does everyone else do?
 
Jul 15th, 2015, 17:44 PM  
thistle
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I got ill not long after graduating uni too, though scarily that was 16yrs ago!

I worked for about a year or 2, gradually getting worse, not knowing what was wrong. At that point so little was known about CFS or ME, few people had even heard of it and even fewer doctors believed it even existed, not that much has changed since then. That's why I had to be sent to a specialist in the infectious disease unit of Gartnaval Hospital here in Glasgow before I was actually diagnosed with CFS and fibro.

I stopped working working for about 6mths and then stupidly attempted to go back to uni to do a masters. I lasted 4mths before having to stop again and haven't been able to work since, which has been 13+yrs.

I live at home with my mother (not great when your 38yrs old!) and have to spend 90% of my time in bed. If I stay up more than a couple of hours at a time I suffer the consequences over the following few days. I've pretty much missed out on most of my twenties and thirties. All my friends from school/uni have all moved on with their lives, jobs, marriage, kids, etc, and I'm still stuck here. They all stopped calling years ago, I don't blame them, we have nothing in common any more.

Sorry. In case you haven't realised, during my period, not only do I get bloated and my IBS flares up, I also get very depressed too. I'm a real pleasure to be around at the moment. Lol.

AliCat, it's great that you were able to reduce your shifts and have such an understanding boss. It must make things so much easier for you.
 
 
Jul 15th, 2015, 21:59 PM  
AliCat
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I started university aged 35 so was absolutely gutted when I fell ill so soon after completing my life goal. I realize how lucky I am regarding work. It can be a difficult job physically but the buzz I get from it is immeasureable.
So sorry you have it so rough. It certainly makes us appreciate the little things in life, like a good cup of tea or a lovely warm bath! And I'm very grateful to the friends I make online in groups like this and twitter etc. Its great to talk to people who understand without judgement xx
 
Jul 15th, 2015, 23:40 PM  
HeavyWeight
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I got diagnosed when I was in Uni, about my second or third year. It was a struggle to get through to be honest, a lot of times I had to drag myself from bed to class. I then took a year out as I was drained. I then started a Masters whilst working two jobs, probably not the smartest thing to do! Currently I have had to delay graduation as I was twice ill whilst trying to sit the same exams! Trying to write my Dissertation at the minute but health and energy, not to mention motivation is failing me!

I work in retail at the minute and as a note taker for people with disability (mental and physical). I am part time - at the minute working somewhere between 24-30 hours per week. I seem in a decent enough place fibro wise, but around Christmas up until May was awful. I was hospitalised in May, still not overly sure what it was. They thought I had meningitis, I had all the symptoms but it turned out not to be. Then I got kidney failure from the anti-virals! My kidney are back to their usual now, but my bloods are still indicating infection and inflammation which is puzzling my docs.

I have really lucked out with my docs, they are always giving me blood tests, trying new meds, and are generally quite up to date on Fibro.

I am really sorry that you have had it so rough Thistle! Alicat I am really happy you have been able to continue through a flexible work approach!

We just need to be kind to ourselves!
 
 
Jul 17th, 2015, 11:29 AM  
AliCat
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HW sounds like your doctors are fab but sorry you've had it tough this year as well. There seems to be a common link with us all that university is bad for your health!
I worked yesterday. It wasn't too hectic but I didn't stop. I'm still in bed, on my second coffee, trying to muster up the energy to get up and walk the dog. Another headache isn't helping matters. Oh well, keeping my chin up and smiling! :-)
 
Jul 17th, 2015, 23:14 PM  
thistle
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Wow HW, you really have had a tough time of it. I am amazed that you 've managed to get through as much as you have. I spent a couple of hours in Ikea yesterday morning and have had to stay in bed the rest of yesterday and all of today because of it. So the thought of working 2 part-time jobs and trying to do a Masters while suffering from fibro...... I'm in pain just thinking about it.

It's good to hear that you have supportive doctors behind you.

Hope you're feeling better AliCat.
 
 
Jul 18th, 2015, 11:30 AM  
AliCat
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Feeling quite low mentally because I'm just so fatigued. Went to bed yesterday afternoon but the dog barked at passers-by, the cat kept scratching at the door and my neighbour was shouting and revving his car engine. So I gave up in frustration.
I'm still in bed again at 10.30 but my daughter wants to go to the Next sale so I've asked son to walk the dog. I'll cook dinner tonight but not going to do anything else today. 😴
 
Jul 18th, 2015, 21:31 PM  
thistle
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Hope the Next sale wasn't too tiring, I hate shopping for clothes, especially during a sale, and you managed to get a rest today AliCat.

xx
 
 
Jul 19th, 2015, 10:42 AM  
AliCat
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The Next sale was manageable but started to get the shakes as we queued to pay. Maybe because it came to 100 and all I had for myself was a pair of jeans! (Lucky daughter, but in her defence she has to wear office clothes to 6th form and needed new for her last year of school). However, I must point out, they were SIZE 12 jeans!! Bit tight but they're my new goal. Managed a little nap in the afternoon. Still extremely tired all the time. Can only presume it's a flare.
 
Jul 19th, 2015, 11:43 AM  
PurpleJ
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hope you don't mind my joining in the conversation. I find it so strange we were all in or just finished uni, perhaps the stress is a trigger. I had boughts of depression in my teens, 20's and 30's. I started uni in my late 30's and was a bit 'off' at times in college. I had a hypomanic episode where I spent a fortune and got a big tattoo started - by the end of it I'd crashed and sought help after giving up driving due to thinking my car was trying to kill me, and finding myself judging the speed of trains on a platform (with intent). I was put on anti-depresents but long story short 3 years later my degree was wrecked and I'd been diagnosed as having Bipolar and on anti-psychotic meds. A few changes and I've settled on a med that seems to have me stabilised at the moment (touch wood). I withdrew from my degree in the last term, and am left with a bundle of debts for that. I have started working in retail part time, only an 8 hour contract but I do around 15-25 hours a week. I'm enjoying the lack of stress and how fast time goes at work. I also generally do lates so can sleep late in the morning and have the energy for my shift. I mostly don't do two days in a row though next week I have 8 hour day then a 7 hour day which will be tough for me.

I'm really lucky my husband is supportive and my diagnosis has offered insight into my highs and lows.

AliCat hope you feel less tired soon, Glad you managed the next sale. We had a sale on last week and just working the tills was manic enough without actually trying to shop in it. lol
 
 
 
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