Not wanting to feel socially isolated

[Haych3]

Hi I'm haych

I just want to get a greater understanding of how to deal with EDS & hypermobility , as I'm struggling to cope with the pain mentally - physically, and needing tips of how to control of anger build up low moods?? My mobility everyday is real bad and I'm on meds and pain cream to rub on body where needed, some days feel like screaming sometimes suicidal due to pain but it's because of my kids and partner I get through ... I just want to know if anyone relates or friendly advice because one I was diagnosed I was told cope with it deal with it through pain meds or go to group talks like pain management clinics pls help

[Jay66]

Hi. It is normal to feel a whole range of emotions with EDS. You thought you were a fit and healthy person, and now you have to deal with constant pain with very little (if any) support from doctors. It would be not be normal if you didn't feel angry and upset about it.

But there are a lot of others in the same boat; here on healthunlocked and out on facebook. Can I suggest you join one or more of the fb sites where people share their frustrations and triumphs and techniques for just getting on with daily living? I think this is the best one if you are in the UK facebook.com/groups/1451508...

and this website is best for USA

inspire.com/

We all have good days and bad days (or weeks/months). I have been fighting the low moods thing myself for about 20 years so I know it can be difficult to see any light.

A few things have helped me beyond all other things: first - a diagnosis!. Also, good painkillers - I just would not get up without tramadol; going outside even when the weather isn't good (wrap up well) as somehow it lifts my mood and broadens my horizons which can seem to shrink if you are indoors a lot; getting somebody in to clear and clean the house either for you or with you (this may just be me - I get anxiety attacks now from too much clutter and my OH and son are unhelpful in this area). Also, pacing myself and not putting as much pressure on me to do all that other people achieve. Remind yourself that you are doing the same job as them but with the equivalent of carrying a massive load on your back at the same time.

For you it could be a whole different set of things.

[Haych3 in reply to Jay66]

Thank you my love much appreciated and I will do wish you the best and hope you safe healthy and we'll x

[Jay66 in reply to Haych3]

There are 5341 members of the fb site EDS UK (the one I posted a link to) and 4648 in fb site Chronic Pain Sufferers Uk. At any one time there are hundreds of people on there who can listen and respond with kindness and understanding to anything you are going through. Here on Healthunlocked there are maybe 50 max active members although they are all helpful and supportive - so for anybody feeling social isolation, I think facebook is your best place.

[Tillyray in reply to Jay66]

Hi haych. Jay has given you some good info, and she explains well just how we all feel living with this. I can totally relate to what you're feeling and dealing with. I struggle with excruciating pains, disability and related conditions. My son has EDS too and so I know it isn't easy..

We have our good mood days, and our low ones. At the worst we still somehow manage to get through. At my bad times physically or mentally, I have a plan in place. I watch box sets, paint, read a novel, research my related conditions to further be able to help myself -as well as being able to tell the Doctors what I'm experiencing and why- GP's very often can not offer much to help either due to lack of knowledge or nhs resources, so its necessary to learn to manage it yourself. Getting prescribed the right pain meds, support/splints and finding what works for you will help..

I also found a huge difference when I changed my attitude and the way I operated. I no longer worry about things I cant do in life..or if my windows are clean etc..I do what I can when I can, and I dont care what anyone else thinks about it.. 'people judge you no matter what you do'.. so do it your way, steadily and at your own pace..

mindfulness is really helpful for staying in the present moment and enjoying each moment without distraction, worry or fear. I have ocd and anxiety and it really helps me. Meditation is very relaxing and there are good apps so you can do it for short bursts at a time..Music is great therapy, listening to it, singing or strumming along out of tune on any old instrument🙂 My son and I do some terrible interpretations and we have a laugh.

In recent years I've suffered with depression, I found support at mind.org.uk

You're not alone with the way you feel, we understand, and we support one another.

Best wishes xxx

[Haych3 in reply to Tillyray]

Thank you Tilly and your not alone my love I'm always here if you wanna ever talk, I know I feel and understand all u said that's my life always worrying about what others think I feel alone mostly suicidal most days and the worst I have no family my hubby is good but not understanding of my condition he's a man he goes work uses work as an excuse always saying I'm tired what about me three kids one 10-3-2 two girls and one boy who's 2years old I'm slowly drowning pls keep doing you and thanks for positive feed back ...

[Country4eva]

I truly understand how you feel. I was on pain management 10 years then when the opiate epidemic hit boom. They took them away. I to struggle with anger, not sociable, think about dying. Y me? I get up every morning and walk four miles. I have had to change doctors. I have family that doesnt want be around me. I am care taker for 78 and 81 year old parents. I have failed so much with meds and over the counter meds trying to get myself through the day. I have had to give it to God. He has blessed me with so much and my actions were not showing it. I was arguing with people, screaming at doctors, my family , the lady at the drug store. You have to push not only physically but Push also means pray until something happens. I have walked my four miles, going get my hair and nails done and pick up things for my mom. I will pray for you and your family. Why did we get this. The only answer is God is using us for something great. Hold on. Peace be still. Much love my friend.

[Haych3 in reply to Country4eva]

My dear thank you very much for the heartfelt message and like wise wish u nothing but good health mentally physically and emotionally and so much joy and more happiness to come my dear I ask god to guide u through the light keep you safe and help you through this all, and any time you wanna talk I'm here and be strong and hold on god's best of planners and he tests those he loves, Speak soon my love xxx

[Country4eva in reply to Haych3]

😁

[Country4eva in reply to Country4eva]

😁