my husband has secondary progressive ms and also suffers from tonic clonic seizures regularly. The ms has affected his cognitive ability particularly processing information and speech. No memory, very poor speech, he needs wheelchair, has supa pubic catheter and bowel issues. I have been with him since I was 15 and I love him very much. But I’m feeling lonely-yet again it’s Saturday night and I’m sat on my own -he’s been in bed since 7:30 pm. I just feel my life is passing me by , there’s so much I want to do, to see and experience. I’ve recently lost my dear mum who was my support so I guess I’m grieving too but oh dear I’m just feeling so lonely.
sorry for the Miami I’m just feeling sorry for my self
I’m sorry you feel this way, caring for someone you love is one of the most difficult and selfless things a person can do, but we do it because we love that person and would do anything for them. I understand how you must be feeling, have you got a strong support network around you? Family or friends? Maybe there is a support group you could connect with nearby? Even a cup of tea and a chat could make the biggest of differences. Thank you for being brave enough to reach out, and being honest, MS is hard and people who dont have anyone in their lives with MS find it hard to understand. I hope this post helps xx
My husband who suffered from PPMS developed pneumonia and passed away on the 27/11/19. What is taking away 90% of the grief, is that he told me to always trust The Lotus Sutra and I will be protected. So I am celebrating his life. Of I miss him very much. Please read The Lotus Sutra, English translation by Burton Watson.
Hello, my hubby looked me alone for 11 years before hed listen and accept we needed carers. Weve had them for 8.5 years now and couldn’t cope without them. Speak to social services about an assessment for both you and your hubby. Carrying all this is too much for you…and yes, you are grieving for your dear mum. Take care chuck xxx
You are grieving for your mother. I am grieving for both my husband that recently passed away and my mother who died four years ago. Is there any other carer or friend that can look after your partner when you want to be with other people for a few hours.
I really know how you feel. My husband was diagnosed in 2004 and over the last 16 years there has been a steady decline, especially since 2013. He now has secondary progressive MS and takes medication for seizures. My mother passed away 10 years ago this year, I still miss her very much.
We seem to have a lot in common… My husband and I still manage to do quite a few things together, thanks to his mobility scooter, such as going shopping and visiting a cinema or restaurant (we live in a friendly accessible area in East Sussex). He does get tired very easily and I have to make sure that he paces himself. Often I get worried about what I will do if he gets much worse. We have been married 30 years now and I love him a lot. I do not have any support from family or friends which makes things difficult sometimes. I do try and get out to meet up with friends and old colleagues regularly, but they do not really understand what it is like to look after someone with MS. They see a different side to me when we meet up. I do not burden them with all my problems, otherwise they may decide that they do not want to see me again!
Hello Anon, I’m sorry to hear about you and your husband’s situation. Have you been in touch with your local Carers’ Support? They’re there for you - https://www.carersuk.org/ Good luck.
My wife has Secondary PMS…diagnosed 22 years ago.Just finding the going tough at times- and a bit lonely as she is now wheelchair bound and we don’t go out much.Our MS nurse visited yesterday and I asked if there was any groups that I could join to be able to talk through how caring for someone with MS feels…she mentioned this group.
Hi Napoleon! I`ve had MS 22 years too! Been married 48 years next month. Retirement is waaay different to how we hoped and planned. Hubby is my main carer and we have others coming in twice a day, to take some of the strain. I hate this disease and what it has done to us. Boudsxx
Hi Napoleon, my wife was diagnosed 25 years ago (symptoms for a couple of years prior) and has now also transitioned to secondary progressive. 12 months ago she could still stand, and walk (with a walker and sometimes with a crutch) but now she is fully wheelchair bound and is pretty much bed-bound (although the ‘bed’ is a specialist reclining chair but she mostly lies down in it).
It is very lonely; we have few friends left in our circle, most weeks we don’t leave the house and we have visits only every 3 or 4 months. OT has been great and has helped us with whatever kit we need to make life as easy as possible, but that really isn’t easy.
My wife is an advanced stage and we don’t know what that will bring us. She fights every day still although we are trying to face the future and are making necessary plans.
Stay strong, and hopefully you’ll have more good days than bad!
Edit: probably worth saying we’ve just hit 50 so relatively still young to have lost so much! Some days we have it worse than others. Today is one of those days!
Hey Freddie thanks for the reply,sounds very similar to our situation.As you say some days are better(!) than others…it can be difficult to stay strong but life deals some difficult cards sometimes . It is good for me to enable to talk to people who are experiencing similar things and know you are not totally alone.
we are also in our early fifties by the way…so I know what you feel
I am really happy that this forum exists - we are all in the same boat sailing in the same direction!
My husband and I are nearly 60 years of age now and have been married over 30 years! Life has become very difficult and sometimes I look back at all the lovely times we had when we were younger (sounds really corny!) and I feel sad and happy at the same time. Happy that we managed to do some lovely things together over the many years, i.e. holidays and hobbies, but sad when I sometimes see much older people still going on long distance trips, or sporting activities and really enjoying their retirement to the full. Something which we cannot do!
Someone once said that I was a very strong woman, strong mentally perhaps but not physically. I worry what to do when things get worse, i.e. when my husband falls down (which he frequently does now but somehow usually manages to get up himself) and I cannot lift him up. Thank God for the NHS and Social Services, they do a fantastic job!
I think that it shows how little people understand, when I’m constantly being asked how we’re coping with the Covid 19 isolation and I say that it doesn’t feel any different to our so-called normal life! I can thoroughly recommend carers support groups and excellent forums like this! My husband first started having health problems in his early forties-we’re 61 and 60 years old respectively-the first real sign of MS, though we didn’t know it at the time, was a fit 16 years ago. We then had a 3 year struggle to get a year free of fits so he could get his driver’s licence back. By this time, after the second fit, he was diagnosed with epilepsy. He managed to drive for about a year but with increasing mobility problems which he put down to a back problem, then he had what was diagnosed as a mini stroke. We’ve since discovered that both fits and mini stroke symptoms can be signs of MS. He was finally diagnosed 4 years ago after numerous tests and a lumbar puncture by which time it was secondary progressive ms. Covid 19 has definitely made what is an already difficult time a lot worse cos normally I’d say get out with family and friends as often as you can cos it’s vital for your mental and physical health. Just sitting outside with a cuppa lifts my spirits. I haven’t much spare time for gardening, but I have a few pot plants and grow a few tomatoes and this year I’m being really daring and having a go at growing potatoes in this so-called foolproof pot! It may be foolproof but it remains to be seen if it’s Julie proof! I’ve found that I really appreciate the little things like the changes of the seasons and the swallows arriving. My husband was never as potty about wildlife as I am but one thing he loves is his bird tv. I’ve positioned our bird table outside his bedroom window and he loves seeing all the various birds that arrive and can now name most of them. He has his own private cage fighting when the starlings arrive! You can even get these little stick on bird feeders which I’ve seen on a lot of care home or flat windows. I said to hubby if you can’t get out to see the wildlife, I’ll bring the wildlife to you! It’s sometimes a struggle to afford the bird food-but it’s definitely money well spent! I thoroughly recommend that and Skyping etc for bringing them out of themselves! No matter how morose hubby is, if certain friends and family slag off Bournemouth or Southampton before he knows it, he’s having a heated debate! Take care and don’t feel guilty for what little bit of me time you manage to have-you so deserve it! Xx
Thanks very much Bouds! Sometimes it just takes someone like your good self to say something nice to lift your spirits! Especially when you’re having one of those all too frequent days when nothing goes right! Xx