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[babyjane]

Lil22 I improved once I stopped work but I was fortunate in that I received Incapacity benefit at the time and my husband was also working.

I have the brand name of my medications on my prescriptions because I need to stay with the same brand all the time, especially my thyroxine.  My consultant wrote to my GP and asked for it to be brand specific.  My levels were very unstable when my usual brand was withdrawn and I was given generics.  Once I found a generic I could stabilise on I have to have it every time, same with my SSRI and beta blocker.

My anxiety is high at the moment and I am running on empty.  We have a big family event at the weekend.  I am so looking forward to it though.  I will deal with next week when it happens but I might not even know my own name by then  . 

[DaisyB]

BJ - yes they know and are really supportive but I hate asking for help and so I end up selling myself short every time I need a bit of a cushion.
They are an organisation well versed in DDA and I don't know if they would feel insulted if I printed off the sheet from Romsford clinic for non sufferers?? My manager does not suffer fools gladly but I trust her implicitly and she is more than accommodating- she has often scolded me for doing too much BUT we are expected to go the extra mile so that is always going to be a contradiction in itself!
I'm stuck to my sofa as I type a tiredness you will know well where I feel spent but unable to get a good nap 
When I'm good I can forget I even have it and then it comes crashing in - sometimes due to physical exertion sometimes stress and sometimes
Theres no rhyme or reason!

[Butterfly22]

Yep! Ditto! Mind I had a record last night I went 4 hours before I woke up xxx

[Butterfly22]

Oh I don't want to push it! Maybe give it another ten years for a four hour sleep 😂Xxx

[Butterfly22]

No it's just to really dangle that carrot and annoy us!!
Here's what you could have! 😂😂😂 hmm no you can ha e two hours instead! 😡Xxx

[babyjane]

Lil22 thank you for the PM.  As soon as I am able to I will reply.  I know Emma could transfer my old posts but I have decided to start afresh.  I will soon clock up the amount needed to send PMs 

When I saw the chronic illness psychologist at the ME clinic she stressed to me that when people with ME/CFS have a remission and increase of energy it is essential to 'bank' some of this energy in order to have a reserve next time you need some extra to avoid the crash. This means trying to resist catching up on cleaning windows or scrubbing the floor all on the same day.  think of it like a bank account, if you exhaust your funds you go overdrawn and pay the price in interest.  If you try to keep some funds in reserve then you can transfer those when your account becomes low.

Don't quote me as I rarely practice what I preach but that is the general theory 

[babyjane]

I was advised to never tackle more than one major job/task a day (hoovering or laundry or shopping or baking for example) and no more than 2 small ones (doing a crossword or watching TV or writing a letter) even if I felt I had the energy to do more. Dog walking no more than 20 minutes and hubby did the 2nd one.  It was all about prioritising.  Oh it all made so much sense but I didn't reckon on my OCD anxiety and fear of failure at the time so I couldn't put it into practice.  I am much better now after 12 months of psychotherapy but I still get relapses because I am human like we all are.

[Butterfly22]

I'm a bit of a perfectionist so can't relax unless my house is clean, if a job needs doing I want it done ASAP!
That's what was hard telling myself save some energy.
ME is a horrible thing, I would not wish on my worst enemy.
Hug to all you ladies xxxx

[DaisyB]

Well girls a dreadful day all round   met with private GP - and employer. Shocked at employers attitude really - ambushed would describe how I felt when I showed them a phased return plan - I was asked to use annual leave for the deficit hours and told I'd be left with a few days to do me for 6 months. My company should be leading by example as we tell others how to do it. I am so disheartened. I am now using annual leave whilst on sick leave for my holiday and am dreading the return!
Washed out this evening  I've contacted ME centre in Romford for advice as again I mentioned to private GP how recovery was slow due to fatigue and she just nodded  sooooo annoyed tonight


DaisyB xx

[Butterfly22]

Ah daisy that's awful! It's so hard to get people to understand what we are going through.
Try to switch off if you can as worrying will make you more poorly.
Sorry to hear this
Sending hugs xxxx

[DaisyB]

Lil22 and Sparkle -    feeling really low ( which isn't like me) felt the confidence drain out of me - and got so annoyed on way home just thinking about how differently ME sufferers are treated in comparison to others with disabilities 😢 Ongoing issue with DD just added insult to injury when she brought her MIL and SIL along to GD's vaccinations even though I'd offered to come along for support 😞 Visited parents hoping for some comfort and got a cold shoulder as I've booked a holiday that doesn't include them. So tonight I'm going to accept that as bad as today was - some people are facing much worse and hopefully that will enable me to wake up with a smile 🙂

[babyjane]

DaisyB it is well know fact that emotional lability (heightened and unstable emotions) is a factor in ME/CFS as it also is in menopause so we get a double whammy.  Happiness, excitement, anxiety, sorrow, disappointment among others, are all heightened and we can yo yo between emotions in the space of an hour.  The slightest disappointment can send me off course so this situation with your employer will not be good for you at all but what can you do?  Does your company have a union you could get to support you?

Have you looked at the ME Association? I will PM you the link as not sure what links can be posted on the forum x

[Butterfly22]

Babyjane did you get a reply off me yesterday as can't see if it was sent xx

[babyjane]

Yes I did Lil22 thank you. I will reply.  If you go to your profile, modify profile, personal messaging, tick the box that says 'save a copy in sent items by default' then any PMs you send will be saved