Forum Replies Created
February 15, 2012 at 8:15 am #84514Re: tired out
yes its homemove …my hubby jay has been in contact with the head of housing here in Chichester who has been helpful . Had to go to the top as a patronising woman who was dealing with our housing seemed to be delibrately misleading . Jay also spoke to a woman on the housing allocation panel who was very helpful also . Its my OT who seems to be a bit dippy . She says she will do something but never does, so it has been down to me and jay to chase her up and make sure she has sent e-mails (when she says she has and hasnt) .Have had to pick up copies of these e-mails and take them personally to the housing office as they havent received them . She told us she was pushing for an A banding for our move but did’nt . It really doesnt help as she is on a phase back to work , so getting hold of her is difficult . Its just tiring and stressful at the moment but im sure in a couple of months time we should be sorted but then waiting years for the adaptions to be done on our new accommodation .
I know OTs and social workers are there to help us but sometimes it seems they really dont have any idea …February 14, 2012 at 3:45 pm #84509Re: tired out
we live in chichester . everything so frustrating at the moment . just seems its one thing after another at the moment . my ot is lovely but seriously hasnt got a clue what she is up to (and she is the senior ot here in chi) …we have spent the last month so stressed out its un believeable . Nice to chat to people who have had or dealing with similar probs
rach xFebruary 9, 2012 at 8:54 am #81272Re: Sciatic Nerve Pain & MD
i have suffered with sciatica for years with pain which i thought was in my right hip . taken every cocktail of medication you can think of . It was only last year when i spoke to my md consultant who told me that md was painless but he sent me for an mri scan on my back and it showed i had a prolapse disc . i have had an epidural which wasnt successful and now i am waiting for a facet joint injection in april ….x fingers it works then hopefully painfree and no more popping pills !!January 1, 2012 at 5:47 pm #83382Re: accepting the outcome
i found what you have written here most interesting . I was diagnosed with LGMD over 10yrs ago but only last year got the full diagnosis of LGMD2A last year . I was always lead to believe that this type was an adult form . I really feel most lucky as its only in the last year that i use a wheelchair full time and im 40 this month . Things have got increasingly difficult in the last 2 years , i suppose as my arms have got increasingly weaker . I have always been a very active person ie worked , mum and enjoyed a great social life . Now that im in a chair im still as active but its just different as having to drag my husband , who is my main carer around with me and i have given up work …not that i mind especially in the cold winter months haha . I have also just had to give up driving as i used hand controls but having to ask my husband to steer around roundabouts is not such a great idea …
I think its so important to have a good support system around you , family , friends carers …people that can pick you up when you have a down day , not that i have them very often but when i do there is always someone to vent anger or frustrations too . My husband always says to me to take one day at a time …he is my rock ! My daughter who is now 18 has watched my deteriorate and is amazing …when i got diagnosed she was 8 . She has been with me when i have fallen in the street and people stare, laugh and point , they seem to think you are drunk . When people see an elderly person fall out in the public everyone automatically rush over to help , thats life i suppose .
I get my new electric wheelchair in the next week or 2 and i am so excited as i will be able to get myself around by myself again , woo hoo ! so thats all good . I employ a pa through the ILA direct payments also which is great, gives my hubby a bit of respite .The best thing is being in touch with people with MD through this site or the one on facebook (LGMD beyond limits and limitations)i think thats what its called …great for people newly diagnosed as when we were , i was at a loss as to who to talk to who would understand what i was going through .
anyhow take care
rachelJanuary 1, 2012 at 8:53 am #83826Re: Cushions and mattresses – pressure issues
my mum just bought me and my husband a new mattress , cost a fortune but its fairly firm but supportive. i found memory foam mattressess a nightmare as made me ridiculously hot and where you sink into it its almost impossible to turn in bed ….the problem now is my husband cant get on with the new mattress and liked the memory foam . aaahhhh ! my ot wants us to get a double profile bed which can seperate and will raise and turn me to sitting position but need to get busy with getting the grants and funding with this as been quoted £4000 …why cant life be easy ? xDecember 30, 2011 at 3:58 pm #83782Re: blue badges
i havent only been stared at ..i have been shouted at by an old lady who stood in the way of my car as i was heading into the disabled bay , she came to the side of my windscreen and screamed ‘are you an invalid’ i hadnt even turned the car engine off , i can laugh about it now but i was fuming . i suppose the best thing for me when this happened was when i put my blue badge on my dash board and got my crutches out of the back , 2 witnesses came up and gave her a right going at and the look of total emmbarrassment was a picture .
The point is though , if people didnt abuse the blue badge scheme and misuse the bays then this wouldnt happen !December 30, 2011 at 1:55 pm #83779Re: blue badges
0.5% misuse its laughable …who comes up with these statistics , probable the same person who works out what the unemployment rate is in this country (dont get me started on that one as i have an18yr old daughter unemployed and has been told she cant sign on as her dad is still claiming child benefit , which he isnt ) the hidden truth , how many more young adults are in the same situation but they need to keep the unemployment numbers down ….aaaggghhh back to original subject …
the supermarkets dont help with the blue badge parking , my husband has marched into sainsburys on numerous occasions as we havent been able to park due to misuse of the badges or people blatantly parking without badges and some of the culprits have been their own staff ,even though their is a clamping sign but we have been told the clampers only turn up once a monthDecember 29, 2011 at 9:06 am #83511Re: Wet Room & Super Loos
we are about to have a wet room put in but we only have a 1 bed flat and they want to rip out our only storage cupboard in our hall way to make the bathroom more accessible … as our flat is housing association the ot has said its either that or we could put in for a move to bigger accommodation. think its more hassle and stress we dont need , but hey ho ! i love the idea about a sink like they have in hairdressers , that would be brilliant .December 21, 2011 at 3:14 pm #83593Re: Christmas is cancelled (again)
woman like this make my blood boil …children arnt weapons for mothers to use to make the dads lives miserable . My husband had this with his ex every christmas but now thankfully his 2 are old enough now to make their own minds up what they want to do for xmas …. the thing is , his 2 children ( 16 and 18) both saw what their mum was doing and totally resent her as they are both so close to their dad .
things will work out in the end …but it doesnt make it any easier for what you are going through at the moment . our thoughts are with you and good luck xDecember 16, 2011 at 4:33 pm #83380Re: accepting the outcome
i have always been a positive thinker /doer …i set myself little mental challenges so to stay that way . I think of what the future holds and certain things get to me . The biggest one is , being a grandma in a few weeks time (im only 39 by the way haha) and not being able to cuddle the baby …still it gets me out of the night feeds . The most important thing to me i suppose and it might sound vain , but to keep myself as healthy and look after my appearance …hair and make up and a good sence of humour …and i always think to myself , there is always someone out there far worse off than you !December 11, 2011 at 9:54 am #83371Re: back op
i find out more about the op on thursday …im not sure what they will suggest about exercising mu muscles as im in my w/chair full time , maybe hydro i would hope . im really worried about getting in and out of bed as i am in the process of finding out about a profile bed but they are so expensive . We know of 3 grants we can claim for and my family can come up with half the cash but need this sorted out before they tamper with my back . my husband who is my main carer has got the same problem with his back and is struggling transfering me ….im just wondering if its worth the bother and just grit my teeth and suffer lol
i found that site on fb by the way …. its amazing to be in contact with so many people with limb girdle isnt it ? its nice to chat to people who understand what you are going through
take care carl