By Catta on Monday, February 19, 2001 - 12:22 am:

My husband has just no understanding for my EDS. He thinks that it is an excuse for me not to do things like carrying my two year old baby, walking long distance walks, take care of homework and work for about 40 hours a week, and lose weight/work out. The fact that I'm very tired in the mornings and have difficulty getting up so he could sleep longer because he has a "tiresome" work, can't he understand. How can it be that I'm so tired? Isn't just an excuse for me that I've got EDS? He says also that it only depends on how much you want to do things. I can't get him to understand that I have this gigant fatigue that eats me whole....And in the same time I have to learn to live with this disorder and take care of my disabled child. I think it is enough already..
He says I can't use EDS every time.. I don't think I do! I would like to do much more but I just can't get the strength to do it. The household, the children and my work takes more then I have already and I feel so useless when he says that I should try harder. He doesn't want to read anything about EDS, he says that I should lose weight, then I will be alright!!!
Am I strange in any way? Am I lazy? Is it a matter of willpower? I think I'm going crazy!!!

By Sheena on Monday, February 19, 2001 - 04:01 am:

Catta, You have my sympathy. Dealing with a young child is exhausting for most people. In my own case, the first obvious difference between my husband's energy levels and my own were that he was a morning person, and I could not get up early, even for a special event like travelling on holiday. After a couple of years he realised that I was not lazy, just different. 10 years later we had kids, and I certainly got very tired when the kids were young, but I gave up work, so did not have that extra pressure. I had some HMS problems then, but did not know what it was. The main problem did not appear for another 15 years. In a way it was a relief to have a diagnosis which explained why I never had the stamina I wanted.

Do you absolutely have to work a 40 hour week? I physically could not have done it. I only began to work part-time when the kids were at school. Is there any way you can unload some of your responsibilities? As long as you attempt to keep up with everything it may seem to other people that you have energy for the things you want to do, but not for the things they want you to do. (I don't mean that I think that!)

If you can get a bit more rest, so that you are healthier and less stressed, it will show to other people, and you may be able to convince them that it is the extra rest that makes the difference. Hopefully they will then realise that you just need more rest than other people.

You do have will-power or you would not be coping with a job and a family as well as HMS. I don't know you, so can't say if you are crazy or not! But your message is familiar to others on this board, and I hope you get some good suggestions.

By Sheena on Monday, February 19, 2001 - 04:03 am:

Catta, You have my sympathy. Dealing with a young child is exhausting for most people. In my own case, the first obvious difference between my husband's energy levels and my own were that he was a morning person, and I could not get up early, even for a special event like travelling on holiday. After a couple of years he realised that I was not lazy, just different. 10 years later we had kids, and I certainly got very tired when the kids were young, but I gave up work, so did not have that extra pressure. I had some HMS problems then, but did not know what it was. The main problem did not appear for another 15 years. In a way it was a relief to have a diagnosis which explained why I never had the stamina I wanted.

Do you absolutely have to work a 40 hour week? I physically could not have done it. I only began to work part-time when the kids were at school. Is there any way you can unload some of your responsibilities? As long as you attempt to keep up with everything it may seem to other people that you have energy for the things you want to do, but not for the things they want you to do. (I don't mean that I think that!)

If you can get a bit more rest, so that you are healthier and less stressed, it will show to other people, and you may be able to convince them that it is the extra rest that makes the difference. Hopefully they will then realise that you just need more rest than other people.

You do have will-power or you would not be coping with a job and a family as well as HMS. I don't know you, so can't say if you are crazy or not! But your message is familiar to others on this board, and I hope you get some good suggestions.

By Vicky in England on Tuesday, February 20, 2001 - 10:17 am:

Catta, you have my sympathy too. When you look at a person with HMS or EDS you can't tell how much pain we are in cos if we showed it on our faces we would frighten small children! We don't have a visible defect, and it's not well known, so getting other people to understand is very hard. But when it is your partner that doesn't understand it becomes so complicated. You want support from them more than anyone else, and when you don't get it it really hurts. Also they have so many complex emotions about it, on one hand they hate to see you in pain, and as they can't do anything really to help, they just go into denial, then on the other hand most of them have this image of a perfect wife and mother, like their mother was and expected you to live up to that. My boyfriends mum has arthritis, but continues to cook clean and generally slave for his family, so he used to think I was playing it up for sympathy; but what he didn't understand that she has no quality of life; she has to just lie on the sofa frm about 6pm, until she goes to bed, so that she can start all over again; I am not prepared to live like that, and neither should you. Maybe you should try to get accross to your husband what it is like. On a good day pain wise so you can think straight, get someone else to look after your child, or if you can't just wait till they're in bed, then make him read a printout of the essay HMS and pain, (on the english website; www.hypermobility.org ) the tell him exactly how you feel; that you can't continue to fight this on your own and you need his help, support, love and understanding; not daft comments about weight loss ( why do they all do that, do they really think it will help!) If I can get it through my boyfriends thick skull, it ha to work for you! But most importantly, and this is something it took me a long time to realise, is that the only person who can make you truly happy and seccure is yourself. No matter how many times someone else may criticise you, the harshest words always come from ourselves. So try being nice to yourself. You say you want to do more; but you work 40 hours, look after a disabled child and clean the house. That would kill off anyone! I think you're fantastic, cos I am having difficulty doing a degree and working, and I only do 8 hrs week. Of course EDS will make you tired; all our muscles are working harder than anyone elses, and our bodies natural balance is disrupted. So please stop being so hard on yourself, and try and get your husband to listen. If it's any consolation, I'd been worrying about how I would cope in a job whe I graduate; but if you can do it, so can I. I can understand you sacrificing some personal time and energy for your child, but you should not have to do that for your husband. Put your foot down ( gently! ); you have to go easy on yourself, make yourself happy, and try to communicate how you feel.
I hope this helps
Big gentle hugs

By Vicky in England on Tuesday, February 20, 2001 - 10:21 am:

Catta, you have my sympathy too. When you look at a person with HMS or EDS you can't tell how much pain we are in cos if we showed it on our faces we would frighten small children! We don't have a visible defect, and it's not well known, so getting other people to understand is very hard. But when it is your partner that doesn't understand it becomes so complicated. You want support from them more than anyone else, and when you don't get it it really hurts. Also they have so many complex emotions about it, on one hand they hate to see you in pain, and as they can't do anything really to help, they just go into denial, then on the other hand most of them have this image of a perfect wife and mother, like their mother was and expected you to live up to that. My boyfriends mum has arthritis, but continues to cook clean and generally slave for his family, so he used to think I was playing it up for sympathy; but what he didn't understand that she has no quality of life; she has to just lie on the sofa frm about 6pm, until she goes to bed, so that she can start all over again; I am not prepared to live like that, and neither should you. Maybe you should try to get accross to your husband what it is like. On a good day pain wise so you can think straight, get someone else to look after your child, or if you can't just wait till they're in bed, then make him read a printout of the essay HMS and pain, (on the english website; www.hypermobility.org ) the tell him exactly how you feel; that you can't continue to fight this on your own and you need his help, support, love and understanding; not daft comments about weight loss ( why do they all do that, do they really think it will help!) If I can get it through my boyfriends thick skull, it ha to work for you! But most importantly, and this is something it took me a long time to realise, is that the only person who can make you truly happy and seccure is yourself. No matter how many times someone else may criticise you, the harshest words always come from ourselves. So try being nice to yourself. You say you want to do more; but you work 40 hours, look after a disabled child and clean the house. That would kill off anyone! I think you're fantastic, cos I am having difficulty doing a degree and working, and I only do 8 hrs week. Of course EDS will make you tired; all our muscles are working harder than anyone elses, and our bodies natural balance is disrupted. So please stop being so hard on yourself, and try and get your husband to listen. If it's any consolation, I'd been worrying about how I would cope in a job whe I graduate; but if you can do it, so can I. I can understand you sacrificing some personal time and energy for your child, but you should not have to do that for your husband. Put your foot down ( gently! ); you have to go easy on yourself, make yourself happy, and try to communicate how you feel.
I hope this helps
Big gentle hugs

By Catta on Wednesday, February 21, 2001 - 05:37 am:

I haven'nt been very clear, I'm sorry...
I must be home now, but the ideal is for me to work a 40 hours week ( Both from my own piont of view and from my husbands!). But with my smallest boy disease, I can't work more then 8 hours a week now. The rest of the time I take care of my baby. He can't walk, talk or eat by himself and he's nearly 2 years old. When he gets older and hopefully manages a little bit better by himself, I can decrease my workingtime. It's no use to even try to work more then 8 hours. It's just not enough anyway. For the moment I don't have any pain, but I get tired from almost everything. Carrying, driving the car longdistance, cleaning, walking, working..
I go to the hospital with my youngest about 4-5 times a month, and he has a physioterapist who train him every second week.It seems like I'm not able to cope with stress. My fysioterapist says that I'm extremly hypermobile in my joints. I'm not allowed to certain things, because I wreck my joints. For me the fatigue is more troublesome then the pain and he doesn't understand why I'm tired!

By Vicky in england on Wednesday, February 21, 2001 - 06:21 am:

Catta;
Try explaining it in terms he will understand. Your body deals with the pain that the hypermobile joints cause so that youu don't notice it, but that takes up so much of it's energy that there is not enough left for normal life. This coupled with the life you have means you are shattered all the time. Tell him it is like the engine of a car; when it is not tuned properly it will guzzle more gas! And if that still doesn't work then tell him 'tough, I don't care if you don't understand you you just have to deal with it. It isn't going to change anytime soon, so you can either get over it and help me which will help us, or you can continue to make the problem worse with your current attitude.' Sometimes shouting at them helps to galvanise your own mind into action as much as it does theirs!
hang on in there

By Rick Spear on Saturday, February 24, 2001 - 06:08 am:

Catta;
My name is Rick and I can understand how you feel. It is hard enough for us to deal with this on our own and when your family doesn't understand or listen it makes it real hard for us to deal with things other than our disability. If you would like some help telling him how it affects people he can email me and maybe from one man to another he might get a better understanding. I know how it is my family ie. dad brothers ect. don't understand why I can't do all the things I used to do and they don't want to hear about it they just say I'm making up excuses not to work. It is hard enough for us but without family support it is even harder. My wife is great she doesn't fully understand but she is there and that is the best medicine for me emotiionally and mentally. Hope things get better. So keep your chin up and know your not alone.
GOD BLESS & PRAYERS
Rick

By george bamford on Sunday, November 11, 2001 - 02:27 pm:

hi i know what you mean .i have a bungalow and car that i get because of my joints .and you just think every one is looking and saying look at him nothing wrong and screwing the D.L.A(disabilty benafet in u.k)spelling bad sorry.when they dont see me crying and being in bad form with my 3 kids and my wife just thinks im a moody so and so.i dont take tablits as i cant swallow them but am trying to get some other way of takeing something for pain.thanks .im from n.ireland

By Michelle on Thursday, April 18, 2002 - 04:00 pm:

George, I live in South East England and am reapplying for DLA as it runs out soon. I know full well you are not just screwing the system, and would like advice on how to get DLA benefit - so far I have only managed to get minimum care level (just under £15 per week!)

I'm sorry for saying all this and I really hope you don't think I'm taking advantage. I have only just been diagnosed with EDS 8 days ago but have had problems for 12 years.

TO ALL OF YOU having problems communicating with friends/family I know how you feel, my husband refuses to look at anything to do with EDS and so he doesn't understand what we go through. My friends think I am a hyperchondriact and that it's all in my head.

I am always exhaustead as I work two jobs (48 hours 15 mins per week) and nobody outside of these boards seems to understand. I'm also having surgery for my scoliosis this summer and am very worried about that, and how EDS 3 will affect the surgery.

Thank you to all of you for being here and listening.

Take care and God Bless
Love Michelle

By mike on Saturday, April 20, 2002 - 07:02 pm:

folks,
i have used a more upfront way of dealing with realitives. i have not been diagnosed with eds, but i have dysfunction and hypermobility in specific joints that leaves me in pain.

try this, ask them if they have ever thrown their back out? or if you have knowledge of a time when they did, and then they laid around and complained. well nail them with it and tell them that is your every day! if that doenn't work ask them the last time they let someone beat them with a baseball bat? remind them that is how you feel. stay strong, if you are diagnosed, THEY are the ignorant not you.