Struggling at work
Posted , 6 users are following.
Hi. I have just founf this support group and have been reading the comments. I have had CES since 2011 and have been trying to live a normal life even though I walk with a limp and have no feeling at the back of my legs and my left foot. I have to self catheterise and have total safddlebag anaesthesia. I struggle to sit for more than 20 mins and have regular electricity like pains shooting down my legs. My issue is that I am being moved to an office that is over an hour a way and I am really anxious about this journey that I will have to do every day. Is there anyone else who finds sitting on trains or in the car for longer than 20 -30 minutes an issue
0 likes, 8 replies
keith94082 naheed08955
Posted
You need to see it doctor. I struggle 24hours a day. I can sit for long or stand. I had urgent surgury in Aug 08. They said the relived the compression but the nerve damage looks bad.. I tried to carry on as normal but had 2 serious falls I was in hospital for 3 months with these falls. I then lost my bladder feeling had a subabic catheter then the done a ideal conduit I now have a stoma and bag after that 6 month later they removed my bladder as it had septic inside. Before that I had a colostomy see i have had hernias remove and repaired plus a stoma revision.i would have had none of this stuff if my compression been dealt with straight away I was left for 6 days sent home the first time sent to a&e with a doctors letter. I sued and won a lot of compensation. I have established causa equine syndrome. My back as curved it's self I have so many problems with my back and now my neck. I have had 7 major operations I go into st Thomas's in London for a 2 week assessment for a thing called neruomodulation it is a disc they b put in ur back it as batteries. I breaks the pain signals up so u can reduce ur pain medication. I will need rods in my back as they never supported it when the done the urgent surgury. They should of I can't sue them as they are the same health trust. I am one of the worst cases of ces I am also disabled.
That me so u know I can make suggestions.
U must get a up-to-date Mir scan. If u got all these problems u need surgury dis u have any surgury if not u need help. If u have had surgury. U can't be left to self Cath ur self for a long period that need looking at. U need good meds my main ones are progablin 300mg twice a day. And slow release oxcontine 30mg 2 a day slow release. Ur train journey will make u get worse. I find a trip their and back on hospital transport I am in bed the next day. I keep myself mobile u will find in time u won't be able to do much get help now I know it job u need. I work for the mod so I was well looked after. Please do something if u feel u need to talk I will let u have .y mobile number.
maryanne45 keith94082
Posted
Sorry to write on your thread naheed. I havn't been on here in a while. I just want to ask Keith - did you ever end up getting your spinal cord stimulator in the end? How did it go?
moonshiner naheed08955
Posted
Sorry for your pain. I've had surgery for CES in 2011 also. Our symptoms are almost identical. We run a Facebook closed group for members with the condition if you want to join. Perhaps you have already have! I'm in the UK.
maryanne45 moonshiner
Posted
Hi I have problems with CES too & would be interested to see FB group. It is so 'rare' it has been good to get information & hear from others on this site.
Would you just search CES in FB?
heathermac32 moonshiner
Posted
chrioli naheed08955
Posted
Naheed
I also have CES and have trouble sitting or standing for very long.it feels like a bad toothache in my legs and buttocks. Perhaps you can talk to your dr. And maybe get a note and not have to move to a new office. I tried to go back to work but couldn't . Plus at work they had me carrying big note books etc. they are not very conscientious.
Good luck!
maryanne45 naheed08955
Posted
Hi thanks for your post,
I can relate. I still drive, though there are days I cannot & I do it with lots of thought. I have a lumbar support belt, memory foam cushion under me and lumbar cushion support behind me. Whether I am driving or passenger I always use these things & they do really help. Yes 20 minutes is about my limit for comfortably sitting too & about how long I need to lay flat for muscle spasm to relieve a bit.
Good on you for continuing to work. I have found I have to keep moving about to different positions between sitting standing. Chairs are not my favorite things anymore. Does your doc support you with ideas for keeping active in life?
I hope you can get some support to keep working - can you talk to your union? There are laws about reasonable accomadation but so often it seems better to not identfy as having a problem if you want to get or keep a job, which is just wrong. Good luck with it. Let us know how you go.
chrioli maryanne45
Posted