How do you explain HMS to colleagues/friends/family??

[Ineke1980]

Just wanted to say that the Spoons theory is a blessing to have. It makes me understand the "pacing" people talk about better, and I think I might use this to explain to people why I can do some things on some days, and not others.

[Blaadyblah]

I tend to explain that pacing is like budgeting (saves explaining the spoon theory as most people already understand currency).

Due to my condition, the day to day expenses of my body are very high. The quality of my rest and sleep is poor, so I 'earn' less cash in the first place and it costs me more to perform ordinary tasks (getting dressed, washing up) than it might a normal person, leaving me with less disposable income for frivolities such as going out or staying up late with friends.

I can if I choose go 'overdrawn', however this will make me ill very quickly and the interest rates are astronomical, I can overdo it one day but not three running (the last couple of times I've ended up with a serious 'energy debt' I've wound up in hospital!

Most people (even kids) get this.

[Ineke1980]

Wow, I like that one aswell!

I used to explain it like a ruler. 100% energy level, and down from there. As I have less energy, my ruler starts lower, and as stuff costs me more, I lose more, quicker. That usually does the trick, if I decide to explain something. Usually though, I just let little things slip and don't say much. I like to fly under the radar

[Gharanth]

I use the letter on the main site and explain that I was born with this and I cope the best I can.
I explain that my joints are loser than normal and weaker and the surgery that I have had did not work so sometimes I appear unstable. I also tell them that there is no miracle cure or quick fix but it has made me who I am.

Fortunately I have wonderful, understanding friends, family (a lot with medical backgrounds) and work colleagues. A lot of them feel more comfortable talking to me about things now as they know I will answer openly about HMS without going too scientific and offer support if they have something similar to tell me. I am accepted as just like everyone else and and I am training is graphics and pre-press art setting along with guys half my age! I'm lucky as my employer looks for strengths and not weaknesses.

[SteffP]

When the symptoms were at their worst I was in the process of looking for a new job as the Management in my department were not very sympathetic - I had to make up the time that I missed for my appointment with the Consultant Physio at the walk-in centre and also for blood tests.

I moved departments - within the same office in December 2006 when I had just been formally diagnosed by the Rheumatologist and referred to physio so they all knew that I was having regular physio sessions and my manager didn't have a problem with this

Everyone was quite surprised when I came in one day with a crutch to take the pressure off my right ankle which kept spraining but were all happy to help and still ask about my joints now and then

They're used to me popping out to get more painkillers when my wrist moves out of place and starts hurting in the middle of typing something so has never really been an issue

I usually explain that EDS means my joints are looser than they should be and hurt when they move out of place which can happen without warning - they don't really need much more than that but they do laugh at me sometimes when I've been out for lunch and injured myself somehow! I was in the park and tripped over some low level fencing during my lunch break once - i just didn't see it and went right over the top! Damaged my ribs and my knee but recovered in the end and they were all sympathetic but also slightly amused

[millie]

this is so tricky. I've been searching for some way to inform my work about EDS/HMS but either it's too medical and long winded or it doesn't explain how I feel . I don't want them to think I am incapable of doing my job but it would be helpful for them to know my limits, and what sort of things exacerbate my symptoms. (like standing too long etc) . I'd like something that just defines the condition with a list of symptoms and perhaps a bit about the unpredictability of it all . Any ideas ?

[wilde]

hi just to add to this thread -

does anyone have advice on how to get the condition across to your other half? i have looked at the F&F letter on the main site but i think my husband is quite scared (i am recently diagnosed) and doesn't understand the condition or diagnosis. his main response to me being in real difficulty now that i have drugs prescribed is - 'have you remembered to take your pills?' or a variation on the theme. i've tried to explain, but i think he sees this as just being a bit bendy which hurts sometimes. without resorting to constantly saying after every sentence'I AM IN PAIN' i don't know what to do. Having a particularly bad day today which makes it more pressing and harder to do (the explaining/tears connection!).

ideas or experiences very gratefully received.

[Eloise]

hi Wilde,

I understand how you feel, even though I don't have another half, I did have an big arguement with my friend last night (she is like a sister) because she just wasn't being understanding. I just found the jokes about being a wimp and lazy all too much. But with her being female, she was able to understand that the tears were because of fustration. I just explained how I really really want to do things - but my body won't let me.

Sorry, I haven't got any good advice, but if you let him read some of the infomation on the main site it may help, and I am sure there will be people on here will similar problems that will be able to share their experience.

At work today, I took in the little booklet "Living with HMS" that I got when I applied to be a member (infomation on the main site). Quite a few people read this book and it prompted conversation, they were able to say - oh it affects all your body and is interlinked with other conditions. So that was good. One person said - I like that it is a young woman on the front, it shows it affects all ages and there is no obvious outward signs of the pain.

[Sandy L]

Wilde:
Keep n mind that a typical male respons is to try to fix things. When we are unable, it leads to a sense of failure and distress. Occasionally, reassuring that he is not expected to fix your problem may help, as well as asking for help doing specific tasks that you have learned are likely to cause problems. A fascinating book (also an easy read) titled "You Just Don't Understand" by Deborah Tannen explains that and more. It was on the best-seller lists for quite a while and is probably in your local library.

[cuddles]

The way i explain it is like this
(i have Marfans by the way )

every morning i wake up i feel like i have had ten rounds in the ring with mike tyson
i feel battered and bruised
i ache all over ,it is like having the FLU 24 hours a day ,7 days a week ,52 weeks in the year
i feel warn out all the time , i am like one of those rabbits in the durracell advert fitted with the cheep batteries

even though it hurts to do so i try to smile through it (yes even smiling hurts)

but i am still the same person on the inside ,which counts

(some males do understand)

love
cuddles xxxxxxxxxxxx

[millie]

good explanation cuddles !

[cuddles]

thanx millie
what i should point out though is i am not down in the dumps
like i have said here ages ago ,i do believe in what Dr Patch Adams says ,Laughter is the best medicine
i am lucky to be here (i had a few close calls medically which the doctors didnt think i would pull through etc )

anyway ,must dash
laters
cuddles xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

[cuddles]

millie
if i were you i would use the letter posted onsite
now i dont know if my friend wrote this letter herself and passed it onto the site ,or she used it ,BUT i did help her a lot to make the people close to her understand the way she felt / feels
use it ,change it to suit you
when you have a copy done give it to your closest friend to see what they say about it ,and go from there

cuddles xxxxxxxxxxxxxxxxxxx

[millie]

which letter Cuddles ? I am glad you have a positive attitude, it's not always easy as you know ! Sounds like you've been through allot and have fought to overcome loads of medical problems. To be honest sometimes just venting feelings on this site is enough to lift my spirits a little, as I don't want to seem like a moaner !! Nobody judges you on here and thats bliss ! Thanks for your input cuddles, keep smiling.

[aninja]

Hey Millie,
Look at the home page in the Living With HMS section - click on Friends and Family - you will find the letter that Cuddles is referring to there!

Take care

aninja
xx