I am not the hms sufferer I am the partner of 25 years. Partner has had various problems causing pain and multiple surgeries for 15 years...only in The last year a physiotherpist diagnosed hms. I have tired to be supportive and have always been the one to find new treatments to try or information. As time has gone on my partners pain has increased along with his anger and these manifest now in what I would call rages. It means I tip toe around walking on eggshells most of the time. I have put up with it because I grieve for his loss of quality life, career and feel overwhelming sympathy for him but I feel like I am running on empty now. We have a 6 year old daughter and I can't let her continue to witness these aggressive outbursts. There is never an apology... 'the pain makes me feel that way' 'you can't know how it feels'. I don't see a future anymore and I am heart broken and sad but he wont take any resposbility and I am tired and depressed living like this. I don't have any hope left
Bonjour
Ce message est si triste. Je compatis vraiment avec toi et ta petite fille.
Je suis une victime de hmjs et je plains mon mari - nous sommes venus à Londres pour le week-end et hier j'étais brillante et aujourd'hui j'ai tellement mal et cela a gâché notre journée aujourd'hui et je pourrais pleurer pour mon mari qui a essayé de la rendre spéciale pour moi. Il ne comprend pas ma douleur et comment le pourrait-il.
La douleur vous fait vous sentir si misérable, seul et triste. Je souhaite pouvoir juste être un partenaire actif et normal pour lui mais je ne peux pas.
Je fais semblant de sourire mais quand j'ai très mal je deviens très silencieuse ce qui crée une atmosphère.
Je me sens si triste pour toi, ton mari et ta fille xxx
Hi Katrina
Thank you for your response, it made me cry. To be in that position where your pain ruins a lovely weekend and I can imagine trying to smile through it must get so hard. I feel so awful complaining when I don't have the pain you and my oh have to deal with. I feel guilty and like I should feel lucky. But I worry about our daughter thinking it's normal for mums to put up with the anger and equally ok to deal with frustration with temper. It's just horrible for all involved and really there's no support. No one can see chronic pain... it doesn't have a missing limb or often there is no obvious sign of it being so dibilatating. I morn a normal, happy partnership and I'm sure you and my partner do too. I wish you all the best it sounds like your husband loves you lots x
Bonjour
Votre mari a-t-il suivi une thérapie ?
J'ai eu un très bon conseiller pendant cinq mois et je dois essayer de me rappeler que certains jours je suis sans douleur et j'ai hâte qu'ils arrivent.
Seul vous savez à quel point votre mari se met en colère et si c'est assez grave pour partir. Si votre mari est un homme en colère en dehors de sa douleur, alors il s'agit de trouver un moyen de surmonter cela.
Certains jours, je ne peux pas marcher et mon mari fait des centaines de kilomètres à vélo et je me sens si coupable et si mal pour lui qu'il n'a pas une vie normale.
La douleur est handicapante, invalidante et si épuisante, mais vous devez aussi être traitée avec gentillesse et amour.
La vie n'est pas juste et malgré avoir des douleurs chroniques aux pieds et une douleur k depuis mon réveil et toujours assise dans le train en rentrant de Londres, je compte mes bénédictions de ne pas avoir une condition comme le cancer.
Je sais que nous sommes aux extrémités opposées du spectre, mais vous avez besoin de quelqu'un à qui parler aussi.
N'hésitez pas à m'envoyer un message xx
Hi there. Pain sucks but so does being the partner trying to help. Tough situation. Katrina has the best idea. Thinking of those worse off. I used to picture all the really sick people in hospital on my really bad days and be thankful that wasn't me.
Sounds like yr husband is in a dark place just now. No, you can't know how his pain is or understand. But, on the flip side, has he thought how life is for you. Wondering when he's going to rage? Or how yr daughter feels watching mum and dad?
Sometimes we need to be pulled out of our funk and be thoughtful of others. They are suffering to, just differently. Learning some cbt may help. Or meditation. I have learnt many tricks to stay positive over the years. Feeling angry and sorry for himself will not help yr man. I truely hope you find a way through all this. Good luck.
Hi Chacha,
So sorry you are receiving the brunt of your partners outbursts.
I am not making excuses for him, not in any shape or form, but as a sufferer of hypermobile EDS, losing my career, my independence and most of my friends (fed up with me cancelling arrangements etc) I have become bitter, and a nightmare to be around when I'm in pain - which unfortunately is more often than not.
I don't have a partner to take it out on, and my two eldest daughters help me immensely but know not to fuss around me because I get emotionally distressed, mostly because I'm 45 and didn't expect to lose everything so early in life and it hurts deeply that I have to rely on them, and my 17 year old son, or not being able to spend time with my grandsons because I can't move.
I get fed up feeling useless, I'm sure your partner feels useless most of the time too. He's not being fair by taking it out on you or your daughter, but I'm sure he does it to cover his embarrassment. - Little boys pull the hair or shove little girls that they like, I'm sure that mechanism of hiding emotion continues into adulthood.
Anyway - Has he had a formal diagnosis from a doctor? You said a physio diagnosed it, but I would suggest you both go to see your GP and ask for a referral to a rheumatologist for a formal diagnosis.
Does he take any medication? There are various pain medications and also tricyclic antidepressants that help with pain. Also, maybe an antidepressant to help with his mood.
It may take a while to find the proper combination of suitable meds, but it should help him in the long run.
Have a look at the hypermobility and EDS websites for loads of advice and information. Thankfully, more and more awareness is being recognised in the medical community and if he refuses to go to the Dr, maybe go to see your own so they can offer help.
Good luck
Ery
I've suffered hm for 25 years, diagnosed 10 years ago and only offered more and more medication, that has worse and worse side effects. So I started acupuncture and it's helping, maybe that could help your partner? It's worth a try.