First timer

[L1lgem]

Hi,

First time I've done a post of my own but I've been tempted plenty of times to beg support or advice! I'm 40 spent my childhood often at the hospital with hand/foot dislocations have endometriosis, modullary sponge kidney, ADHD, hip impingement, carpal tunnel syndrome, a touch of arthritis and soft tissue disorder I'm on multiple pain killers to get through the day also Ritalin and antidepressants I was seeing a pain specialist who recently diagnosed soft tissue disorder but my dad had a heart attack and discovered he needed surgery before my last appointment and I got discharged before eds diagnosis tho I'm sure that's what it is anyway I have a sick dad who I look after tho he lives 40 miles away and 7 children 5 of whom are still young enough to live at home 2 are autistic I'm no longer with their dad so I'm on my own with no idea on how to self help and no time for more me appointments at the moment any ideas from anyone greatly appreciated would like to reduce pain med intake

Thank you

[B3ndy]

I'm so sorry that you have so many things on your plate at the moment. It's easy to feel overwhelmed with all your difficulties. I'm sorry I don't have any magic formula to offer instant help. But here are my thoughts on how you might get help.

Ask for help. This sounds simplistic I know, but often we don't realise that just asking, in a straightforward way, can yield results from the most surprising places. Be realistic about the sort of help you really need. Do you drive, do you needs lifts to places, do you need childcare support while you are doing other things like visiting your Dad? Are there any mums amongst your childrens schoolfriends that might be able to do the school run for you, dropping off and picking up? Is there any help available from any Autism organisations/charities nearby?

What about any voluntary groups nearby? Where I live there is a place called 'the Helpful Bureau' who offer all sorts of help. Contact your local Citizens Advice Centre or try the Doctors surgery for advice on voluntary groups or sources of help nearby.

Try to contact support groups where your Dad lives as well, they might be able to organise things like picking up prescriptions, shopping etc to help your Dad. I hesitate to mention it, but often local churches have volunteers who can help with certain things, you don't have to be religious to access their support.

My other point is - why do you want to come off pain medications? Is it just a point of principle or are you experiencing side effects? If you are experiencing side effects like sleepiness then maybe you should speak to your Doctor about changing your medication rather than stopping it. I am on 4 types of painkiller, 1 antidepressant and one blood pressure medication. I don't have an issue with the number of tablets I take, it's just a fact that helps me get through the day and live my life as best I can. You shouldn't be ashamed of taking pain medication - you have a life long genetic condition that causes a lot of pain!

Good luck.

Lesley

[Jay66]

Hi. With everything you are coping with at the moment, I really don't think now is the best time to try to come off or reduce your pain meds. I was told I would be on pain meds for life with this condition, and they were right - no amount of not working, muscle strengthening, not having to run around kids etc has made any difference to needing pain meds. There is a lot of negativity about them but they do a job and unless you have having worse side effects, I would leave them alone.

You mention autism - there is a link between autism and hEDS. I suggest you get both yourself and any who are hypermobile referred for testing as a diagnosis can make all the difference with access to help.

People with hEDS often have a whole drs notebook of other issues, which are all related to the central problem of having defective collagen.

You say you are no longer with the father, but you don't have to shoulder every single burden by yourself. When you have decided how much 'me time' you need, can you get him to work with you to sort it out? If, for whatever reason, he isn't willing to do that, get him to pay for a cleaner at the very least. When one of the parents is unwell or disabled, the other one should take on more than the 50/50 share.

[Saassii]

Medical cannabis if it's an option. I'm so sorry for your struggles. Pray and meditate, read God's word, that's my greatest help xx