ohh tried a christmas stocking filler shop and never felt so much walking, getting slower not sure how much i can take anymore.

[fairycazzie]

ohh my 12 yr old wanted picking up from Tesco and i took her to our little shopping mall as thought got my Blue badge (no spaces and had to pay)

she made me take my stick (fold up) put in my bag and after just walking from car to the doors of entrance i started really feeeling it! grrr ohhh i not sure if going to crack and fall to pieces soon as frustrating .. i tryied my hardest but not even sure what it is that debilitates me the most .. my base of back hips and tops of legs and feet , my neck when i use the stick arms and hands i am walking around gritting my teeth and getting slower, as feels like i going to give because the twinges are sparodic and in my buttox too both of them .

i have had sciatica before and i know Lyrica masks a lot too and the pain relief.

i am getting so scared for next year as i feel its progressing i just want to cry at times.

i get bad moments of shooting my in my face and it scares the hell out of me now cos i dont want that to move in like other symptoms. grrr

as well as the tinitus getting louder and the wasp sound i hear (this is not a problem as only hear when silent mainly ) i feel like had crawling in my head again (not nits lol)

i got up this mornig and had to stop half way down the stairs as out of breath , then once pills in i was ok ..

i am so trying to be strong but sometimes its hard.

sorry for the moan and downer tonite (not teary but just fed up i guess) how can you shop with blooming stick and even my bag too heavy as i forgot my shoulder little bag.. my daughter is brilliant!!! she really looks after me and i say AM OK!!! DONT FUSS PLEASE BUT REAlity is its slowly coming xx

[Ozzygirl64]

Hey hunni we are all entitled to moan and the only time I do it is on here, and to three email friends that fully understand me even though only one of them has fibro. But the thing is hun they have their problems and I can show them sympathy when they email me a good old moaning session. That is the way the cookie crumbles. I have all the things going on that you mention plus lung disease and menieres as well as awful balance issues caused by the fibro and the menieres, awful combination. And there are days that I feel I just cannot go on, like this week for instance. A week today my daughter was rushed into hospital yet again. Me and hubby shared the visiting, I could have easily stayed at home, but chose not to. For him to visit was easy, his mum took him, stayed the hour and brought him home again. She is 65 now and really hates driving int he dark so it was hard for her and there was no way she could do two trips in one day and hubby hates buses so they are a no go for him right now. But for me it was a bus trip(as I went when mother in law was not available, so every other day), over an hour each way. I did the 3-4pm visit, then I walked around the streets looking at all the pretty Xmas lights, in the dark and cold and then went back for 6-8pm visiting. Then I had to get the bus home again. Now from the shopping mall there are no bus links after 6pm to my home area. This meant a dark cold walk all the way home from there, uphill! I did it, but was half dead to the point I could not even move to get my key out to get in anad had to knock. So this goes to show that even though we are in so much pain and we are so fatigued that we keep pushing forward and that my love makes us stronger in mind and spirit, and for that we should be very proud of ourselves. You did well, you pushed on and you got the job done, well done you. My daughter is home now and she is still very ill and cannot go out. Hubby has to stay with her incase she blacks out etc as I cannot move her whereas he can. So all the shopping etc has now fallen to me and I cannot do it all in one go as he does, I have to do it each day. You be proud of yourself, you deserve it. I hope you get some rest now xxxxx

[hamble99b in reply to Ozzygirl64]

Hi ozzygirl,

I think that the red cross will help by doing some shopping for you for up to 2 weeks. they did it for me as I live alone, but recently for a neighbour of mine who moved her very ill father when he came out of hospital - it might be worth asking. Iceland deliver free.

I'm pleased your daughter is home, but sorry that she is so poorly.

regards,

sandra.

[Ozzygirl64 in reply to hamble99b]

Hey Sandra

While this is a fantastic idea my daughter would not hear of it, she would push herself first. She struggles with things like that, strangers etc, even if they were just dropping shopping off for me. We have an Iceland but all the items needed are from Asda, I know they do home delivery too but three times I have ordered from them and three times they have messed up my bank account by trying to take money twice, they won't get anothwer chance. I am off to bed now, exhausted and dead on my butt lol thanks hun xxxxx

[hamble99b in reply to Ozzygirl64]

night hun,

sandra.

[hamble99b]

hi hun,

I've started using my own scooter while out. I've decided that it's a positive step as -

I can be out for a bit longer;

I can get further;

the pain is less;

more quality time with friends as I'm not struggling to breathe/move/keep up;

I get to be out where life is going on;

I meet nice people who smile or pass a moment [eg "cold today"] or ask if I can reach;

I'm acknowledged as a person - not invisible, I exist!

I get to be independent.

I know there are negatives but they're the same as everyday when I'm on my crutch [es] so they aren't botherable [ I just made that word up! ]

try the scooters out in supermarkets first. I hope this might help.

regards,

sandra.

[hamble99b]

also hugs to you all,

sandra.

[Extremelygrumpy]

I have been out on my scooter 3 times today, first to get some bits of shopping I could fit on my scooter, ended up at the library instead, blooming fibro fog, got home then realised I hadn't got any shopping , off on my scooter again, got the shopping went home , got in the house and found the shopping list of the things we needed, none of which I had bought... So back out for the third time.... No way I could have walked all that way, I recommend a scooter like Sandra ... Erm I mean I agree with Sandra, mind you a scooter plastered with Sandra's face I am sure would be delightful.

VG x

[hamble99b in reply to Extremelygrumpy]

'twould indeed! - it'd stop people being in the way! I've heard of a face like the back of a bus, but the front of a scooter...hmmmmm.

thanks for the chuckle VG.

sandra.

[fairycazzie]

Hi ladies ,

Great helpful useful stuff .

@Ozzy girl sorry your daughter not so good and do hope things are ok and do not keep her in hospital too long and is home for Xmas, Black outs have they talked about Pace makers?

I 'used' to have black outs after rides at fun fares and when ever i do anything of a similar kind of thing i black out and yet everytime my Dr's ask me have i had black outs i say NO becaue i think of 'recent' not past.

My neighbour had a stroke and Gullian barr but recovered slowly and is very slow he is in his 80's and loves to try walk to shop for excercise, (his daughter is my customer too) she has RA (arthur she calls in stead of Arthritis and takes Methotrexate and gets serious migraines) He now recently had Black outs and was in Hospital so put him a pace maker in.

This is why i asked on that one with you saying she has Black outs bless.

@ sandra Red cross sounds good for anyone who would need the help and not able to get out and never knew they did these things. ( i dont need of course as home with family plenty of help and if i was on my own i would a Delivery service ) but you have to be internet really to do likes of Asda shop. Iceland you go down get the shopping and they deliver i used this service a lot of years ago (its been going a long time) when i lived alone with 3 kids and no transport.

Scooter - i see them in supermarkets and joke about it all time and say GOD i could use that and i say over and over again NO you dont need one, but wihtuot the Trolley to hold onto i would as i could no get round the supermarket and i cant explain like i said cos the meds mask a lot its spine and legs and arms and hands too weak just unexplainable to put in words .. i htink that is only one i could use as i drive so unless i could get one inback of my 4x4 lol needing a ramp. i think for time being i hope i can manage but is it 'seasonal' or is this is whats to come for me for the following years as i seemed to have progressed. which i think the Mobility syndrome combined adds to it and i keep reading and researching and i say got to sink it in your head you may need 4 little wheels aswell as 4 big wheels lol

hmmm will see how i go over xmas as i really can not afford one at all .

VG@ you lol you are funny!!! i am not aloud to our local shops i went last week and had no idea where the bread was kept and the woman who works there a neighbour of mine just says can tell you dont come in often hahahahah (she had breast cancer a couple years back and has an amazing sense of humour and you would never think she had) she was back at work and still slating everyone walking through door as she does not care! she looks like errrm her that helped Gordon Ramsay in 'Hells kitchen' red head teeth funny as anything ..she is just like her!! you never know how to take her either.

Do any of you Drive and still have a Scooter ?? can you get help with a light weight scooter?

xxxx ohhh love this site it really helps as i do not know how i would get along.at all .xxxxTHanks xxxxxxxx huggles

[pinot]

Hi peeps we all seem to be struggling just now,I was out to shop but pain was so bad by the time I got home I don't know how much longer I'm going to be able to walk it is just unbearable for me.I don'tfeel I can go on like this any more.I have ruptured discs and sciatica as well as fybro.this pain is too much to bear. What now I can barely walk but keep pushing myself but I just want to die..a week without sleep,I'm exhausted...I wish you all a painfree night and some healing sleep goodnight friends. Xx