The Future with EDS and HMS

[andreak]

My daughter is nearly 18 and developed Complex Regional Pain 5+ years ago. Since then she has been told she has Scheuremanns (spinal wedging of vertebrae), developed POTS where on a bad day she can have convulsive faints up to 25 times (normally linked to bad pain flares), Dispraxia, HMS and HEDS. She is a 9 on the Beighton Scale

Some days she is brilliant and manages to get around and be "normal", other days she cannot do anything at all ... take the example of Sunday last when she was so ill she was unable to sit up or move even to get to the toilet until five in the afternoon and her lips and nose had turned blue and she was gasping for breath. Other days pain in her leg and arm will cause swelling and leave her unable to walk or without use of the limb (CRPS ).

People find it really difficult to understand how things can fluctuate so much on a daily or weekly basis and often that leads to people challenging if she really does have these conditions (probably because she is too ill to leave the house on bad days so they never see her)

With that background she is looking towards the future. Currently she is in College and on a full time course (although the hours are limited and the course runs on 4 days only) but left school with only 3 GCSEs as she had to be home tutored or went to a special educational unit for the whole of high school as when faced with a full time daily timetable she would relapse

Thinking into the future how do people manage with the condition at work. Is full time feasable as we find if she doesnt build in rest times / days she has relapses and more frequent bad times. Are employers sympathetic and would DDA make adjustments given the fact she would be more likely that some to have time off work poorly

All my daughter wants is to be healthy and normal and to go out and work and lead a normal life but she is also a realist in that she would not want to start full time and then be unable to manage and feel she had somehow failed

The other question is around family and parenting. Obviously she is quite young at the moment but would like to have a family at some point. The medication suggested for POTS (Sertraline) scared her a bit because our hospital told her she should never get pregnant when taking it as the baby would be deformed (we now find that there is an increased risk rather than this being a given but it definately wasnt related to us as such) so at the moment this is under consideration and fluids and salt seem to be helping somewhat

I know all of this seems really negative but it isnt meant to be. We are both interested in other people experiences on living a full and active life with EDS POTS and HMS and especially from those with a Chronic Pain condition too

Are there things you find help, are there things to take into account, anything at all you can think of that would help or that we should be mindful of either in work, having a family or just in basic day to day living

Neither of us want her to rush headlong into a full and active life and crash and burn, and we know how important pacing is, but in reality how well does pacing fit around a job and a family ???

Thanks in advance
Andrea

[sheppeyescapee]

Hi there I'm sorry to hear that your daughter is really struggling. I hope some more people can come along and support you, I'm not entirely sure what to say really. I myself am a 9 on the beighton scale but I don't have the CRPS and some of the other things that your daughter has going on. It must be really hard for her. I am awaiting the testing for POTS and have chronic pain and fatigue. There are people on here that have been in the position that your daughter is in and they have slowly got better with physio and pacing. There are people on here with families and jobs, I think the big thing is the pacing aspect of things, it's hard to get your head around at first but it really does help. See you around on the boards

[gila]

Hi andrea
HMS is a DWP recognized disability, so yep employers will have to take it into consideration -for example afaiu sick days that are due to the disability are not to be counted as 'sick days', occupational health departments can help with making sure the workplace is set up right, they can get special chairs/equipment to help you being able to do your job etc

and yep diving headlong into a "normally full and active" life is most likely not such a good idea- so you'd have to maybe look into starting off with a part time job with a view to slowly over time try to increase the hours
(btw well done to your daughter for currently managing 4 days at college)

and...re the pots... I had quite bad POTS probs (and regular full faints- though never as shockingly many in a day as your daughter- big hug to you and her!) in my teenage years- was on meds for a while (no idea what they were, it's a v v v long time ago )- but then had decades with v little pots probs (without meds)... so who knows...

otherwise... I also dont really know what to say (or maybe better said how to say things) apart from such not really helpful generalisms as no one can tell what the future holds it all depends... and it all depends on v many different things... some under our control (how we manage/deal with our condition/s)... some way out of our control...

there is no "one" way how an HMSers life will progress/unfold... there's peops that spent some years in a wheelchair to then go on to no longer needing it, starting and keeping a job and then go on to have kids... and work...

others work really hard on managing the condition and chronic pain, have success, start up part time work, do really well for a while , only to be then hit by some new probs that do mean they once again become unable to work and they have to now use a wheelchair...

many of us have to adjust what we think of as 'full and active lives' - I feel mine is once again full and active and happy (!!)- but 'normal' it isnt-
but that can be great too- hannah on here had to give up a job she absolutely loved (she tried everything, worked sooo hard to keep it) and she was v v v gutted- and then one day decided to turn her 'doodling hobby' of drawing funny stickmen into a little book about HMS... now she has her own company, publishing stickmen books, she's done some children's books etc etc- and that was def not something that she ever planned for nor even at all had in her mind as a youngster- but which now makes her happy and fulfilled- the old 'something good can come out of something bad' can happen

so I think... make and have plans, also have a plan b, and maybe c, d , but concentrate on the now, on the baby steps towards any planned results- looking too much into the future can be just too overwhelming, which then might make achieving the baby step results harder-

and do the best you can, hope for the best, but be prepared for upsets, setbacks etc so that you dont get too upset, overwhelmed when things dont go according to plan
(and I feel/think... even for normies... life hardly ever goes 'always/in all areas of life' according to plan and the peops that get closest to achieving most of their life plan are the ones that deal best with set backs... and have dollops of luck )

oh... and re getting details of peops's experiences with 'everything HMS' it's maybe best to try and find time to 'just' have a good nosey around the forum - and for any particular questions you have - like for example the qs in your post like is HMS covered under dda, pots, working full time or not, kids or not ... it is a good idea to use the search facility to see if a thread dealing with these or similar q s already exists - as that way you will find a wealth (though yep, sometimes this can feel like an overwhelming wealth) of info, experiences, thoughts, ideas etc
especially the advanced search options can be v helpful, particularly choosing the 'search topic titles only' option- for example putting in the words "future HMS EDS" and choosing that option found 3 other threads- 2 of which contained imo some helpful/relevant stuff-
also play around with wording of q s and try searching that way-
hope my overly long bla bla bla ; ) did help a wee bit
xxg