Here i go again

Well here i am awake again in the middle of the night arrrrrrrrrrrrrrrrr . I have had a migraine for 2 days probably brought on by worry. Tomorrow i have a 2 and a half hour car journey to lincolnshire to celebrate my sisters 40th birthday. My husband will drive but that still leaves me to sit and wriggle trying to get comfy.

Not seen my sister since i have been diagnosed with fibro and it is a very difficult condition to describe. How does everyone else tell people about fibro in an easy to understand way?? !!!!!!

To make it worse i know everyone will say 'you look well' whilst i am suffering inside i will probably just say 'thank you' !!!!!!!!!

Party doesnt start until 7.30 a time i am usually falling asleep. Maybe adrenalin will pick me up and allow me to enjoy myself!! loud music and a room full of people is just sooooooooooo frightening right now.

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  • Well i really sympathise with you on that when . To go on a car journey i am the same it kills you to sit all that while and like you i start to wriggle about then after that you are messed up for the rest of the day but poor you got to go and face all those people who for sure will say you look well and ask what the problem is . But when you explain fibro it just does not do it justice i just say what it is and people sort of look at you and you can see them thinking And????? but they cant seee all the silly things that go with it (when i say silly things i am not making light of any of them by the way). well i hope that you get there safely and have a nice time. The trouble is you know sunday you are going to be messed up and you have got to travel back so you are in for uncomfortable weekend and you will have to put your mask on which is hard someimes. I too was up in the early hours but my computer s downstairs so i dont come down o go on it . Well try and enjoy the party and hopefully your sister will be as understanding as mine and you can get to have a real good heart to heart with her and tell her exactly what it has taken for you to get to her party. Take care love and soft hugs Diddle xxxxx

  • You have my sympathies!

    I tell people that my body is like a pinball machine. The ball is the pain and is continually being bounced off the inner wall s of my body never quite knowing where it will strike next...just that each pain lasts a long time and some never seem to go away!

    It is the aftermath that is so difficult to deal with...overdo it one day and pay for it for a week! I guess it's like all things in life...moderation!

    On long car journeys i put a pillow between me and the car door...just something soft to cuddle in to.

    I hope you have a great weekend despite everything :)

  • Hiya, hope your weekend proves to be better than you think. I would take pillows with you to form a barrier between you and hard surfaces, I have one I put in front of my knees as well as next to the door. One for your head would be good to and if you have one of those horse-shoe travel cushions or a wheat bag to rest around your neck? Sounds extreme, but they may help. Also take with you something to drink and eat and try and have two stops on the way rather than one if its a long journey, and it sounds it. Maybe you could plan to have lunch on the way?

    Regarding talking to people about your health, maybe refer to something they have experienced? I sometimes tell them its a bit like when you do extra exercise and you have that bruise type feeling in the muscle, but a lot worse and it can be caused by something silly like a bump or over exertion or upset. Sometimes I say its a bit like arthritus pain, but in the muscle - or if they have had a bad back you can refer to that.

    If they say you don't look ill, maybe they mean it as a compliment? Try thanking them and taking it that you look good rather than a criticism. If they don't know what to say it could be a kind comment rather than a mean one, unless they are using it to further the exploration into what it is? I mean what can you say to someone who is ill, you don't quite get what they have but it is obviously causing difficulties and pain? If you take it the right way then you won't feel so bad about yourself and could have a better time as a result.

    This weekend is meant to be about your sister, so don't worry about it too much. You do not need to prove yourself to anyone and their questions and interest in you is part of circulating at a party, you can deal with this as you wish, but if you take it this way you can go on to ask them questions and deflect any further questions so you can enjoy yourself.

    Sorry, this is so easy to say and not so easy to do, but I sincerely hope you get to enjoy yourself. I hope you manage to travel well and even nod off if you get comfy enough. You are not driving so if your husband doesn't mind you taking a nap then try and do so.

    All the best and Happy Birthday to your sister too. Soft hugs.

  • firstly i not diagnosed but the doctors i have mentioned and they want to eliminate other things too 1st so trip to neurologist in April!! cant come soon enough.. and i just going back to look at your post cos forgotten already :-/ haha

    the up in the night and the partying hmm me too now adays it just seems too much all that noise and people (and i love parties and music and friends) this whatever has changed my life over past couple years. went shopping yesterday went in 2 pubs with a friend visiting just to sit down and by time got home out of car i just could not co oridinate to get up the stairs to my house had to take shoes off. i cant do shopping and stairs either just does not go together. xx hope you do get some sleep i got some zopiclone not long back ..its more a case of... i am over tired and cant wake when sleep, i want something to keep me awake but want something to help me sleep too. if makes sense xx

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