People with CFS/ PVFS/ ME - how did you get diagnosed?

[Grockle]

Long story short... After 2 years of symptoms, many blood tests, physio, chronic pain, constant fatigue of varying levels & GP not finding anything wrong, I am now depressed. It wasn't getting better with meds, so I;ve seen a psychiatrist who suggested it could well be CFS so has referred me back to the Rheumatologist.

I'm tired & just want to feel well.

Oh fuzz sorry you had such a hard day, its so difficult knowing you can no longer do the things you used to isn't it, I will say though that I really struggled my first week back I started off with 1 morning then gradually worked up to the 3 days I am now doing and despite the fact that I am struggling it is easier than the first couple of weeks were they really were excruciating.

I have finally decided that there is no way I can go back to 4 days which is what I used to do, I'm going to have to bite the bullet and tell my boss but if her work aren't happy for her to continue to work from home 1 day a week then i may have to leave, even the thought makes me want to cry I've been their nanny for 4 years since youngest was 6mths and don't want to leave. Also who else is going to employ me know

I am so sorry everyone seems to be having difficult decisions to make.
If you do decide to change your work patterns remember it isn't the end of work or necesarily for ever. I cut down work and now only work one short day but I hope to increases that if and when. I am a lot less unwell now - just not yet up to adding more hours.

Smiling, how are you? I'm glad it wasn't anything more serious. Scary though.

Brightwell, so sorry your DD has ME. You're right - she's been sapped of her present and robbed of her future. Hopefuly she'll begin to feel much better. Maybe Uni would be a possibility in the future when she is very much better. I have lots of 'Why me?' questions. I wouldn't wish this on anyone.

I feel as though this has robbed me of my future, ny body, my independence, all sorts. I will look into avoiding wheat.

Fuzz, sorry your day was so hard. I think I have to work out what else I could do. No idea what though. I am not sure I will make it through these 2 weeks of phased return but we'll see. I'm going to try my hardest.

Grockle it takes time to adjust to devastating illness and your future may have changed but do not think there is no future for you. The one thing about ME/CFS is that it tends to improve with time.((Hugs))
Perhaps we need to hear from people who have come out the other side?
I will reiterate I am a lot less ill than 2-3 years ago. I can see some future now -(appearing through the fog) all be it a more relaxed scaled down one than I had envisaged. We as a family have made adjustments to take account of my low energy and dodgy memory.(Ok it took a while!) I have my sad moments but I try to see what I (still) can do. I used to climb and walk - I can still get into mountains(on holiday) to enjoy the peace - it just needs to be scaled down and gentler.

What I'm trying to say is I think I am coming out the other side now - and you will too.

I think the other thing is admitting that you have a devastating, debilitating illness. I know I am not well but it's hard for me to even say that. I am glad you are coming out the other side, magso. It's nice to know there IS another side.

I am shattered now. I've done 3 mornings at work this week but wasn't teaching - I've been in an office, doing paperwork which was great. I am just dreading next week when I will have to teach every morning. I don't know how I'll manage full days when I come to them. I think the good side might be that I'll be so exhausted and unwell when I see the rheumatologist on Thursday that he will be unable to just dismiss me.

I have received an appointment for an assessment for my blue badge. I have no idea what that involves.

Grockle write a diary between now and when you go for assessment. if possible get someone to recorded how you walk both with sticks and also in your chair.....good luck, its about time ME/CFS sufferers got some assistance.

I don't hold much hope but it's ridiculous. I cry with every step sometimes, yet still have to park miles away. It annoys me that I know of people with blue badges who are far more mobile than I am. I will keep a diary, good idea, thank you.

Do any of you have any book recommendations?

Good luck with the blue badge assessment. Hope the assessor is sensible - thats all it needs! Are you still waiting to see the rheumatologist? (yes I've given up trying to spell today)Yes too to seeing others with blue badges who seem so spritley in comparison - especially when I was at my worst.
It is hard to accept that I have a devastating illness - much easier to see that you/others have! I am due back at work too.

Yes good luck with the blue badge assesment. if my FIl can get one for hurting his ankle and yet walks without a stick and carries big bags of shopping then you surely deserve one

Grockle - who did you initally ask about a blue badge? i feel I need one - but not all the time, jsut when I have a flare up and can hardly walk to front door.

Magso, I think it's always easier to see things in other people that we don't admit to in ourselves. It's easy to offer advice and not heed it yourself!

Saltire, I applied through my local council - they are the people who issue blue badges. In my appeal letter, I did say that during a good phase I wouldn't need or use a blue badge but because I am so debilitated on other days, I cannot go out because there'll be nowhere to park. Normal spaces are too far from shops and too narrow for me to get out of the car with a walking stick.

I think the new rules are quite strict (and they cannot take carrying shopping into consideration! )I've read through the dept of transport guidelines, which was quite depressing - it says that if you have a prosthetic limb but are fairly mobile with it, you don't need a blue badge. If you walk with a limp but that might be improved by using a walking stick, then you don't need one.

I have occupational health assessment for work next week and the rheumatologist, so it should be an interesting week! I think it's good that the rheumatology appointment is at the end of the week, when I'll be shattered & hobbling a lot.

Worked and an extra 3hrs this week and am suffering for it today, went to bed at 8pm last night and woke up at 11.15 this morning, I can hardly move.

I spoke to my boss and we both agree that I'm not going to be able to go back to 4 days anytime soon so she is going to ask her work if she can continue to work 1 day from home. They initially agreed to her doing it for 3mths which takes us to the end of November but she is hoping they will extend it for another 3mths.

Solo, I love you

You got it then?! :)

Yes, thank you so much. Made me smile. It's lovely. Love the quotes too. I'd forgotten all about that conversation so it was a lovely surprise. Thank you very much.

I need to send someone a card but I need an address. Would love to send to anyone who wants one, so please PM me.

:) Good! I'm glad you smiled at it.

Don't know how we can do the card chain thing on here. I know a few hands shot up to be included, perhaps we could have a list and copy and paste so we know where we are?
Put your names down if you want to be in it. So, if you'd like a card and will send one along to someone too, put your name down, or you could all PM me your address and I'll match you up to someone else and give you one address each? don't know how else to do it so no one is left out iyswim?

1, Solo

Sorry to be dim, what card chain are you on about

Count me in, can't pm on my phone but will when I have the energy to get the laptop out

1. solo

2 smilingthroughgrittedteeth

Saltire it was just that Grockle was saying she'd love to get a card through the post (off the back of another post), so I PM'd her, got her address and posted one. Other posters said they'd like to join in, so here it is if anyone on here wants to. That's it really. Just a cheer you up card in the post from someone who knows what it feels like to have ME/CFS etc. as we all know, it can be a lonely and invisible disease.

Good Idea, solo... I've put myself 2nd, since I've had a card - I can send to smiling & she can send to next person in list? I keep picking up the card & smiling

1.solo

1. Grockle
2. Smiling

Very hurty day & very feeble. Spent morning shopping in wheelchair

Hope you are all having a lovely weekend.

count me in too....ill send address to solo??

Yes, send to me and I'll pass it along if you want to.

Ok... I got a bit overexcited & PMed smiling for her address

I'll wait til the list is sorted & we agree who is sending to who (whom?)

It's 4.30 and I'm wide awake. I woke at 1.30 for an hr or so. This won't help je be the quiet & serene grockle that I want to be.

Its ok Grockle I am next on the list so you can get as carried away as you like