Fibromyalgia (part 2)

suep

I went to see Dad and it's not good news, they cant find where the infection is and cant get his temperature down, he was so exhausted and it was really upsetting to see him so ill. Of course I tried to not show it until I left.
BZ I always take my wheelchair on holiday, but this year took my electric scooter. Theres no problem to it as the others have said, you just need to tell your tour operater and ask for special assistance at the airport and they will sort it all out for you. Ibiza airport were amazing, much more organised and helpful than Gatwick.

Sharon I hope you had a nice time bowling today. When I get anxious I try and either do a few deep breathing exercises or if possible a meditation, it always makes me feel better and stops that tight feeling I get in my chest.

cwta Im glad your going to have a couple of easy days, enjoy the show.

Isnt the telly carp on a saturday night, I wish I'd got a film out now. Has anyone seen My sisters keeper yet ? I love the book but will wait for it to come out on dvd to watch it as I cant do the cinema, I spend more time in the loo than watching the film :rolleyes:

Careful_with_that_Axe

sharon I think you are being incredibly strong all things considered - good luck with the list and hos is the counselling going? Are you finding it helpful?
Hope you have a peaceful weekend and bowling takes your mind off things.

sue You poor love - sorry to hear about your Dad, but major well done for keeping yourself together.

Awful situations for both of you, but I send you both love, light and peace.

sue Not seen that film yet or read the book - will look out for it. Just bought a cheap book in charity shop today about vamps, called Vrolok. Will let you know what I think of it and promise to post some "take your mind off things" reading on Monday.

Both of you, feel free to contact me any time you want.
x

purplecatlover

morning all

sue not seen the film but ive read the book, i didnt know it had been made into a film until i was talking about it last night with someone and she said it had. im sorry to hear your dad is so poorly, well done for keeping it together, i hope they figure it out and get his temp down asap.

sharon hope you had fun bowling. technology for special effects reall has moved on, its amazing i think the things we used to think were good effects.

Unity

Morning to you too PCL :hello:, weather is brightening up and it's not humid anymore :j.

Sharon - You know my thoughts are with you, as are my wishes for a miracle. If they only happen to remarkable people, then there is one with your name on it. It made me feel very humble that you would take the time to PM me and offer any help you could with my forthcoming decision and I just wish there was something I could do to help you.


BZ - First thing to do when you book is to arrange a mobility seat - either the first row - and on a 737 - around row 15 as well. The first row is preferable if you are going to need the loo of course. Dependent on which airline you fly with, some let you board in your own chair and stow it safely in the crew area - this is preferable as it is ready for when you de-board and it avoids damage to the chair. I went down the voucher route when I got mine as the LA couldn't provide one with a suspension, and I could have bought a second hand car cheaper :eek:, so the last thing I wanted was it thrown around by airport staff. Either way when you book your flights tell them that you need assistance boarding, then if you happen to get a plane with steps rather than the umbilical type fitting, they will arrange a lift. Always remember though that often things go wrong in translation, so be prepared (not so much when you get to the foreign airport, but when you come to check in for your flight back) for there to be no help at all. It's always easier I think if the flight crew are Brits, although Gulf Air are brilliant. The worst lot I've flown with was Cypriot Airlines - who seem to be almost anti-disabled, but you will manage I'm sure.

Suep - I hope that the hospital soon find the cause and correct treatment for your dad's infection and get it sorted out for him.

The girls at the 'Stitch 'n' B1tch ' were talking about 'My Sister's Keeper' - evidently the ending is different from the book - you will have some idea as you've read it. I haven't and they kept schtum rather than spoil it. They also said that it was impossible to hear the end scenes for the sound of people sobbing in the audience, so I guess it's 'waterproof mascara' time, if I decide to go .

Enjoy the rest of your weekend people :j.

Careful_with_that_Axe

Morning peoples
Brilliant advice for bz, Unity.

Sounds like you have a wonderful time at Stitch n B1tch!
Now I'm cutting back the steroids again after upping them for moving, I am distinctly lacking in energy so will start taking things a little more slowly.
Off to the show this afternoon to see kids winning prizes for "Dog with the Waggiest Tail" etc. Love those type of things.
Have a good day all.

HopeAndDriftWood

Hello everyone
I've been really suffering these past few days, completely exhausted and in a lot of pain. Got told on Wednesday that I'd been approved for higher rate DLA, and could get a motability car. I was so excited, because it would mean some freedom and being able to leave the house, even for a five minute drive. Went straight to Peugeot, who found me a gorgeous car, that I test drove on Thursday. It's brand new, and I fell in love with it. Tried to give my NI number, but they said I needed a PIN. Spent all day Thursday and Friday on the phone to DLA trying to get it, before a lady phoned me last night to say I haven't been fully assessed yet?!

I'll have to tell peugeot, because even though I've put £100 down to hold the car, I expect they won't wait long. I'm gutted. I've been talking to DLA for weeks about how life changing it would be for me, and they gave it to me and then took it away.

I'm also very worried about university, I'm supposed to be talking to them about what will happen if I can't attend lectures and what support there will be, but they don't seem to have dealt with this before. They want a meeting with me, but the uni is 2 hours away, and I can't cope with that at the moment...and of course there is also all the financial worries of going.

And I'm petrified of leaving my boyfriend, although he thinks thats stupid and I'll be fine, he'll come to me when I need him.

So much stress

I hope everyones having a good day, it's been a nice morning here, and I'm looking forward to watching the tennis at 2, if I can stay awake through it.

Unity

Paparika wrote: »

Morning bz,

I've had one hell of a sleepless night, amitriptyline didn't do anything for helping me sleep, just had a nightmare instead about the oh.

Feel so tired and i am sure i asked my son to wake me up before he went to school, if he did i didn't hear him, my neighbour has offered to cut my hair and thin it out today, thats not until 10, but it will take me that long to wake up properly me thinks. but looking forward to looking less like i have been dragged through a bush backwards :rotfl::rotfl:.

well it's almost the weekend, enjoy everyone, don't over do it bz

Hi Paparika, unfortunately nightmares are a side-effect of Amitrip :rolleyes: - I was on them for quite sometime from the rheumatologist, so I only found out when the neurologist who was investigating my sleep disorder asked what meds I was on. Some people have told me that Nortriptyline is better (less side effects) but it's more expensive. That's anecdotal rather than medical advice of course .

LW, sorry to hear about your depression, the old 'Black Dog' snaps at my heels and it's made worse by SAD, so thankfully I'm better at this time of year. Some of the rules have changed with regard to what GP's can prescribe - so it might be worth being referred to enable you to get a better selection of treatments.

Just at present I'm driven to distraction with itching - due to the Durogesic pain patches. It used to be that I only itched under the patch itself and this was easily sorted with a tip passed on from the staff at the local hospice, to spray the area with an asthma prevention inhaler. There's a small amount of steroid in this that stops the itch. However I am now itching everywhere else. I've had the problem with other opiates in the past, so I'm just hoping I get the appointment through for the facet joint injections (should be any time now) then maybe I can think about changing to methodone to get off them. Sometimes I'd prefer the pain to the itch because it is so distracting and often I'm awake and scratching for most of the night :rolleyes:.

Gotta think about a nap now I'm afraid - the clockwork has wound down .

kassandra

Yeah I got the keys Friday pcl thanks. So far I've moved one box!

I'm just lurking atm. Feel a bit carp and I just don't know what to say to you all as I can't think positive thoughts and you're all having some real !!!!!! going on and I can't help iyswim. I don't even know if I'm making sense to myself?????

Unity

SaucySecrets wrote: »

Hello everyone
I've been really suffering these past few days, completely exhausted and in a lot of pain. Got told on Wednesday that I'd been approved for higher rate DLA, and could get a motability car. I was so excited, because it would mean some freedom and being able to leave the house, even for a five minute drive. Went straight to Peugeot, who found me a gorgeous car, that I test drove on Thursday. It's brand new, and I fell in love with it. Tried to give my NI number, but they said I needed a PIN. Spent all day Thursday and Friday on the phone to DLA trying to get it, before a lady phoned me last night to say I haven't been fully assessed yet?!

I'll have to tell peugeot, because even though I've put £100 down to hold the car, I expect they won't wait long. I'm gutted. I've been talking to DLA for weeks about how life changing it would be for me, and they gave it to me and then took it away.

I'm also very worried about university, I'm supposed to be talking to them about what will happen if I can't attend lectures and what support there will be, but they don't seem to have dealt with this before. They want a meeting with me, but the uni is 2 hours away, and I can't cope with that at the moment...and of course there is also all the financial worries of going.

And I'm petrified of leaving my boyfriend, although he thinks thats stupid and I'll be fine, he'll come to me when I need him.

So much stress

I hope everyones having a good day, it's been a nice morning here, and I'm looking forward to watching the tennis at 2, if I can stay awake through it.

Sorry I can't help on the Motability issues as I've never had one of these cars. However with regard to university - they should have a Disabled Student Liaison Officer who will sort out accessible lecture/seminar rooms etc. as well as helping you apply for the Disabled Student Allowance towards equipment. If necessary contact the Student Union Rep and ask for representation at the meeting with the uni. You can expect to have whatever is necessary to get you on a par with other students. You won't expect or get anything that gives you an unfair advantage, but they have to ensure you have equal opportunities including extra time in exams (if say pain prevents you writing as quickly as others). I am sure the university will have dealt with this before - but it does involve extra work for them so sometimes they are a tad reticent with offers of help :rolleyes:.

Good luck - it's natural to be nervous whatever your circumstances - just take it step by step and try not to let it overwhelm you.

suep

Kass - Im glad you've got the keys, have you got anyone who can help you with moving ? I cant speak for any others but for myself who is having a carp time at the moment, Id like to read something other than my own problems iykwim, thats what takes my mind off it all . How's Charlie cat btw ?