Just a post about where I could go and how could I get help to pay for a couple of days just to relax by myself or with other people with MS. I have had a terrible time since January 2012. My mum before this date had an 8 cm brain tumour removed but 18 months later had a huge stroke, now cannot do anything for herself, needs careers 4 times daily, then when she was just out of hospital on her birthday I had dad at hospital as his stomach ulcers were bothering him that was 11th April 2012 , he was told that day he had terminal cancer and had 12 weeks to live, with chemo might see Xmas, well 2 doses of chemo and 11 weeks later dad died his last week me and my sister and very pregnant daughter sat with him all and every day , but the Sunday morning I slept in due to exhaustion, dad died before we could get there, I was and still am devastated, mum now dz with dementia cannot remember dad dying so we have to tell her every day, so grieving goes on and on, my brother was dz with Ms a week before dad died and my grandson was born 3 weeks after dad died too, mum now been dz with osteoporosis and my daughter being tested for Ms, my health has gone downhill badly and I feel I need some me time, am I being selfish, have not been out the house since 24 th nov 2014 as I get dizzy feel sick even at the thought of it, as I no longer have anyone to go with me, I have my fab hubby but he does not and will not find out about my illness, I now have extremely bad bladder problems and had a huge relapse last yr where I could not walk and had a cathater fitted for 10days, I now self cathaterise everyday and have to wear inconvenience pads they put me off going out at all as I know everyone can see them. I just need a couple of days on my own to relax , sleep, cry, but feel so guilty that I want this, I cannot afford to go away anyhow, I am 48 but feel 80. Sorry for the rant xx
Janice dear - Rant on - as much as you want. l cannot believe how much bad luck you have had thrown at you. l often say ‘if it wasn’t for bad luck l would have no luck at all’. But after reading your post - l must count my blessings.
l have had PPMS for 32yrs. - Then 8yrs ago my OH had a brain tumour - which he had an op and high doses of steroid treatment which caused type 1 diabetes. He had to give up work - and we have had to look after one another - as well as caring for my 91yr old mum. l have had a Supra Pubic catheter about 20yrs now - which has been a god-send. But l have no control of bowels.
l do worry about the future - and what is going to happen.
lf you could get away for a few days - are you sure you would want to spend it with others with similar problems. l think l would find it rather depressing. l think a few ‘spa’ treatments would be beneficial.
Lets hope someone can come up with a few suggestions.
l hope you are taking a high dose vit D3 and also vit B12 - as a deficiency of both is quite usual for us with MS. Just google vitamin d3 deficiency MS - and the same with B12.
The latest med for bladder control is Betmiga - it works quite differently then the old type ie: Oxybutinin / Detrusitol etc. None of the nasty side-effects. LDN also helps with bladder control/fatigue.
lf you can get to feel better about yourself and more in control - you will be able to face life, and the problems it chucks at you , easier.
Oh gosh Janice I am new to this forum so I hope there will be more experienced people reading your post who will be better able to help you. You poor dear no wonder your feeling exhausted, so much has been happening in your life it sounds like Iits all got on top of you. I lost my mum last april and I know how hard a bereavement is! Do you have an ms support group in your area? If so they may be able to help you. You could give the ms society a call and they would advise you about whats available for you. I hope that jotting it down has helped you a bit - underneath it all you are obviously a very strong person so I hope you can draw on that strength a little longer! Know that you are not alone, I will be thinking of you and saying a little prayer for you too.
Give the MS helpline a ring. I believe the respite care centres run or used by the MS Society have closed but that there may be funding for short breaks. I think I read on this site a while ago about someone getting a weekend spa break.
I hope you can get something organised.