I’m new to this forum. My husband was diagnosed with ms about a year and a half ago after very rapidly going from a marathon runner to a wheelchair user who couldn’t cut his own food in a matter of months. He’s on tysavory (not sure i spelt that right) and we’ve seen good improvement. He can now walk short distances with aid. However, as I’m sure all of you are the same, this was not how it was supposed to be! We were married 6 years when he got ill, in our mid thirties. I just feel like life was ripped away from us. No more walking holidays which we loved, not even dog walks together now. Going anywhere is difficult as he refuses to use the scooter and only wants to use his stick so we hardly get from the car park to the coffee shop and back, if i want a nose round the shops I’m by myself. We both work full time from home so are on top of each other all the time. He has very few friends (which has always been the case) so i don’t get much of a break. I just can’t seem to get over the injustice sometimes even just seeing him hobble along often makes me so angry.
He has turned off all emotion to cope so it’s like living with a zombie sometimes.
I feel like im an awful person for getting so angry after all I’m fully able. But all i want so badly is to go for a walk with him. I get cross with him but who I’m actually cross with is his ms.
Am i alone or is it normal to get so angry as the carer? And how do you cope?
Normal, totally and absolutely normal. Going from wife to carer wife is a hard thing to do.
This is why it is so so so important to take some time to care for yourself, in whichever form that takes for you. It will make you a better and more patient person. MS affects more than those diagnosed with it and taking time to acknowledge that and finding ways to deal with it is vital and not something you should feel bad or guilty about.
Jackie
X
PS. I probs haven’t worded that in the bestest way.
Very unfair but unfortunately normal for the situation.
Here’s a different viewpoint: I’m a man, 61 and diagnosed 3 years ago. Still able to drive myself and get chair in & out of car but otherwise not much more able than your husband. My wife & I are each on 2nd marriage, have each had kids previously, been together 8 years and it was 7 years ago that I started to deteriorate (but misdiagnosed) - until then I thought I was getting sports injuries / wear & tear. I haven’t worked for 2 years and she’s a busy teacher and 7 years younger than me.
Neither of us signed up for this! But it’s here. I’ve advised my wife to make her own life and not feel guilty. We do still do things together, plus she visits friends, goes for coffees / drinks / meals which eases things. She’s going on holiday with the kids in a couple of weeks - I can’t cope with the heat so staying home. It’s not ideal but we’re both objective. We still love each other but I’ve even suggested she get a lover! She was horrified! I got that one wrong but there’s a difference between sex and love. She got terribly hurt in her 1st marriage and I promised I’d never leave her, but have said to her more recently that she can walk away if she needs to.
Different people have different approaches. I’m very objective, others may be guilt-ridden or in denial. Most of all, you have to talk to each other, share your thoughts and feelings. You can’t change the prognosis but you can change the way you face it, in your own heads and jointly. There’s no shame in being frank with one another and we all get just one shot at life.
Does that help?
Graeme
Hi there,
We all wish we could do the things we once took for granted and so easily before under our own steam, but when multiple sclerosis finally takes a firmer grip on our lives, we also get just as angry and frustrated; it’s all so sad for everyone involved.
This morning, I felt so pathetic being in my forties and using a wheelchair, beside my 20 months old nephew in his pushchair, I frankly did not expect it to be like this.
I wish you and your husband all the best, hope you both can find a way to get through the difficulties.
JP
Hi Wishy, this is about my fourth attempt at coming up with a helpful/ supportive reply to your sad comment. It’s a long reply but I hope you find something of help.
To answer your question: no you are absolutely not an awful person so please don’t think that. Do you have good/close friends you can talk with - and any close friends who also know your husband? My wife and I know exactly what you mean by future life being taken away.
In my marriage I’m the one with MS but this reply includes my wife’s input. My diagnosis came 4 years after we first became an ‘Item’ and my now wife was with me when I was diagnosed ( very happy to say that in spite of the diagnosis she married me in full knowledge of what MS might mean).
physically it didn’t affect me too much for several years until I found I had trouble walking for much more than 30 mins or so. Now , after 18 or so years, it’s down to around 10 mins.
The initial diagnosis takes some getting used to and yes, changes / destroys self images and identity. For me, from being a fit , healthy man with a good salary, my own home and feeling relatively attractive to women I suddenly saw my future in a wheelchair and of no interest to anyone . It’s very scary , shattering so I can understand why your husband has perhaps closed off some feelings. However! I’m someone who in general is quite relaxed about talking about my feelings but I know that many men tend to keep them to themselves or just suppress them. Not a good thing to do.
If your husband doesn’t like opening up then does he already read and learn as much as he can about MS and how to live with it? At an early stage I read the book and now website of ‘Overcoming MS’. It’s not talking about a cure but does give a feeling and message that there are things you can do to help improve your life and abilities and slow down the advance of MS. Would it help you husband if he was to read something like that and making him feel that he is not totally helpless and at the mercy of MS and the medical profession? Able to take some control of his future through exercise , diet, Vitamin D, relaxation/ meditation- mindfulness.
One of the things that most definitely helps the body to deal with MS is exercise. Again, is that something that might help with your husband’s emotions and outlook? I saw an MS Physiotherapist recently and she was most definitely encouraging me to do aerobic and resistance exercise- telling me to try swimming ( would your husband be interested in that) and not to be afraid of some heavy weight lifting exercise.
I know what you mean by feeling that your futures have been taken away, I think everyone feels that. On which topic, MS is awful and does take away the ‘old’ futures but, there is now a new future and the challenge is to make the most of it. In our case it has tended to be me who has said , look I’m not going to be able to do many things but : that doesn’t mean you shouldn’t do them and ; let’s look at the things we can do together.
Is there anyway you with perhaps a close friend can encourage (push?) your husband out of his post diagnosis slump and to start looking at possibilities? Having a mobility scooter definitely helps. After getting over the initial emotional hurdle of self conscious feelings that ‘I’m a disabled person on a scooter’ I now quite enjoy getting out on my scooter and have been looking at all terrain ones ( probably to hire now and then as to buy one would mean us getting a new car! I currently use a small folding one that I can take into cafes, restaurants etc and the two of us can go for ‘walks’ so long as the ground is relatively flat - I sometimes push it a bit and the two of us have to pull it out of muddy ground or a steep slope!).
Any way, my general thoughts are first, look after yourself , talk to close friends or I’m a great believer in counselling, and second see if you and friends can encourage, badger , push, guilt your husband out of his slump and get him ‘living’ an admittedly restricted but still enjoyable life. Don’t get me wrong , MS is crap but there are still moments and things to enjoy.