Tired & Lonely

Caring for someone with MS
1

It is that I find myself feeling so lonely and tired. I am a mum and wife, we have an 8 year old daughter and my husband is 43, he was diagnosed in Dec 2001 with PPMS and has had a good life in the past years. Yes he has slowly got worse but things are progressed quite quickly in the past few years in comparison, he is now permanently in a wheelchair, unable to dress him self, struggles to eat things, drops things now because of loss of sensation in his hands and sleeps alot. Although I am very busy looking after him and our daughter, life has started to get me down, I am always tired, tearful and stressed and feel very alone.

I have always been the sort of person that says life is what it is, my life is my problem and just get on with it, but just lately I have really been struggling with my life and feeling alone. Now I know that there are others out there in exactly the same position as me or very close and probably sometimes feel the same. Well today, I went to speak to a very nice lady at our doctors surgery because apparently they are very concerned about my health. This shocked me because when ever anybody speaks to me, they only ever ask how my husband is, how is he feeling etc etc, and while this normally doesnā€™t bother me what has started to annoy me is when people come to the house and ask me how I am feeling, but donā€™t really want to know the answer because they donā€™t care about me.

Well it was during this meeting this morning, that I mentioned to the lady I used to be a member of this forum but had stopped, when she asked why I stopped I said because I only ever read other peoples comments and didnā€™t feel it was the right time for me, my husband was not that bad. She suggested I re-join just so I could let off steam and discuss things with our careers, and actually after reading a few posts, there are others out there like me.

Our life isnā€™t that bad, it is hard work trying to juggle work, caring and child care, but then again single mums juggle work and child care. The one thing that was made clear to me this morning was that I do matter, I am a very important part of my husbands life and care and it is important that I am well enough to do this. She was saying that although my daughter is not the career, that there is support around for her as well to help her understand what is happening to her dad and so she has someone else to talk to other than family.

I would like to say to anyone out there who is a career and struggling with life and the responsibility of it all, there are people there to support you and you do matter, so donā€™t sit back and feel alone, get the help and support you so deserve because you do a very important job.

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Hello,

Iā€™m normally on the other forum but just wanted to say you are important, and I really hope that you get the emotional support and care that you and your daughter need. For many years ivā€™e been a carer to 3 of my children effected by autism and it does take its toll on your health I felt i was invinceable as if could carry on as Superwoman forever but unfortunately i got ill 2 years ago and now iā€™m in a wheelchair , reading your message made me think of my husband who is now trying to look after the children and me while still working , everyone needs support and I am so concerned that he and the youngest daughter 12 years old get the support after all they are young carers too and although they often grow up more with empathy and compassion they still need to have a childhood and have fun away from caring. Have you got a social worker? they maybe able to help often their are young carer groups that your daughter may enjoy, my daughter went to a lovely group where they took her on outings and did loads of fun things with her.

Take care Michelle x

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Hi Michelle

Thank you so much for your message, I am now in contact with a lovely lady who is based at our doctors surgery who is advising me an trying to source support. On her advice I did go into my daughters school today to let them know the whole situation with my husband and home life because our daughter only started there about 4 weeks ago and wouldnā€™t know the details. I had told them that he was in a wheelchair but nothing else, the head teacher was lovely and said it is important that they know these things because it could affect her at school, but to my amazement, she actually said that they work closely with a parent support advisor who I could talk to for support and so could Lucia, also there is a TA that works 3 days a week who is a trained support worker for children so she needs to talk she is always there for her. I was surprised at this because the school only has about 100 pupils and it is something I would expect at a larger school. Apparently, the parent support work also works with the secondary school, so there would be help there for her.

Over the years I have coped well, and just kept going but I think too much as happened to us as a family recently and the whole situation as taken its toll. We moved at the end of January to our own home which needs various adaptions to make it wheelchair friendly, we were in private rent that couldnā€™t be, our daughter changed school and I have changed jobs so that I am closer to home and therefore able to work more hours to financially support the family.

Things will get easier and when I find a support group that I can go to, I will take the opportunity to do so because I do think if nothing else it would be good to talk to others in the same situation.

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Hello again,

Glad to hear you are getting some support, its brilliant to hear that your daughters school are helping, My daughters primary school were very good, sheā€™s recently started High school and i have rung up a few times and written in her diary the teachers are okay but its such a big school and I donā€™t think the understanding is quite the sameā€¦Iā€™m so glad that you are getting some support yourself, I have recently had CBT it helped me come to terms with being in a wheelchair but also made me realise that I can still do an awful lot to contribute to our family. Theres a lot of help out there but sometimes we have to take the first step in recognising that we are of value and can ask for helpā€¦ as mums I think we take such a lot on and often feel bad about asking for help.

Take care Michelle x

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Hello I just wanted to say I found you comments very uplifting, you are a shining example of positivity. Yes you have a raw deal and yes sometimes you struggle yet you deal with it and move on.

Well done and thank you for your post.

Best wishes

Jan x

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Hello ā€˜mum and wifeā€™. Excellent post. I hope all these new avenues of support continue and you get some relief. All the things you mention are exhausting so hope when stuff settles a little you may feel a little calmer.

Hereā€™s to your new home and life, and may you continue to realise how important you are xx

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Hi Lad15.

You sound amazing, so strong and brave and so caring of your family. I am glad you have been reminded to look after yourself. I can empathise with your experience of caring. Iā€™ve never had to do it for such a long time as you, but I had a taste of it when I was 24 and my mother had a brain haemorrhage and was bed-bound for some time while she recovered. At that time I moved back to my parentā€™s home with my young daughter. My dad was working so my siblings also came home, but they were all out working everyday whereas I was a mature student at university at that time. It had been hard enough juggling university along with being a single parent, but now I found myself a carer as well. Because my mum was unable to go anywhere, I was confined to the flat. I cooked and cleaned for all the family. Both my brother and sister were young adults too, so they occasionally coped by going out and drinking too much. I had to clean up sick in the bathroom for both of them at least once each. I guess at the age I am now, that doesnā€™t seem such a big deal, but I was then at the age when I still yearned to be able to go out with young people myself. Also there was no time for me to keep up with my studies.

At one stage the whole family went down with flu. It included a gastric component so there was more sick to clean up. I had flu too, but no chance of rest. My daughter had it. My mother may well have had it, but she was so sick anyway we wouldnā€™t have known. I was hot and achey with the flu one day and my daughter was sleeping. I sat beside a window and looked at the outside world and I felt that I let go of my life; all my dreams of finishing my degree, maybe finding a partner sometime, all seemed impossible. I felt a loosening inside me and at the same time a hardening like a part of me had to be so strong it turned into steel. I suspect you are suffering from this inner steeliness when you have to make your own needs so small in order to look after the needs of others.

It is good to be strong but it is also necessary to find ways to relax and let go your responsibilities or your whole being gets wound too tight like a tense, cramped muscle. I am suffering from physical muscle cramps lately, so this is a sensation I can easily relate to, albeit the physical version of what you might be experiencing in a more metaphorical sense. However I think emotional experiences have physical counterparts and I wouldnā€™t be surprised if you are physically very tensed up as well.

It would probably be very helpful if you could get a chance to do something physically relaxing, for example get immersed in water - if you canā€™t get out to the pool, then a long bath with candles and bubbles.

I was lucky and my mother recovered for many years, from that episode. I was able to finish my degree. You say your husband is now permanently in a wheelchair, so you donā€™t have the luxury of waiting for time to release you from the difficulties of your situation. You are going to need care for yourself while you care for others. There is absolutely no shame in this or in asking for it. I hope you find it as you are truly deserving.

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Hi Space-monkey

Thank you so much for your message. I donā€™t always feel so strong, but life is what it is and when I got married I said ā€œin sickness and in healthā€ my husband did not ask to have MS and I know he gets very frustrated as well because he canā€™t help to do things around the house any more, and he causes a lot of extra work for me.

You are right in that I am very stressed, wound up, most of the time. I have a couple of times in he past managed to find the time for a massage but only when things got so bad I started to suffer with permanent headaches. Now the weather is nicer and things in our house are slowly getting sorted, I have started spending some time on a Saturday down the allotment with my sister, which we do together, I do like gardening it is quite relaxing. Actually, there is still a lot of decorating to be done in the house and things to finish off ie the ramp I have started to build so my husband can access the dining room so that he can eat with us. I have however, started to be a bit more relaxed about them and said I will do them slowly and when I feel like it rather than thinking I have to do them and by a deadline, which amazingly has had a surprising affect, such a simple decision made such a big difference.

Just yesterday, I got home from work and thought I would make a chocolate cake, which I enjoyed doing, I like cooking and I like it more when my daughter helps, but she helped to make the filling and topping and then decorated it. She is going away on Monday with the school for a few days, which she is very nervous about, but I think it will do her the world of good to just have a break from life here. I will miss her loads.

You say that you finished your degree, I take it you passed and that hopefully your dreams are now coming true for you and your daughter. Congratulations on finding the time to complete your degree whilst bringing up your daughter and being there for your mum. It is hard being a single parent as well, especially if you are trying to study at the same time, degrees take a lot of time and effort, I remember from doing mine and I didnā€™t have a daughter at the time.

Take care.