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Quick synopsis + need help

Okay this is my first thread on this site, this is going to be a long one but I really need someone to talk to about this that has had experience before because my friends don’t really know what to say and I’m getting tired of prjecting my problems onto them.

So a few months ago, me and my mum were called into our surgery to talk to our GP about my mum’s xray - you see recently my mum had been losing sight in her right eye and slowly the entire right side started to slope. I panicked and though she was having a stroke so we went up to the hospital and we were glad to find out that it wasnt, then we thought maybe it was nerve damage from having recently having a tooth pulled. Because of her siatica as well, she had trouble walking anyway so that symptom was ignored. I wheeled her down to the surgery for a second time for her to be admitted for a CT scan - any way tangent aside, the doctor found no sign of nerve damage and gave the prognosis from the last available option, Multiple Schlerosis, having done my project on MS in science at school years back, I was just relieved that it wasn’t a tumor or something that needed brain surgery. We got home and I was shocked to see that she had broken down into tears, she kept asking me if she was going to die and after comforting her I ran into my room to calm myself. Usually she is a rock and nothing could bring her down, I had only seen her cry once in my life at our uncle’s funeral. I composed myself and after everyone went to bed I started to look at the symptoms of MS and it all became clear, it seems like the symptoms started about a year ago when we moved house.

After two months of waiting, we finally got an appointment with the neurologist, he perscribed her some steroids to take for a week, at this time her symptoms had gotten worse, she could barely stand on her own, she cannot see properly out of both eyes, she got headaches all of the time and she would cry over the littlest things, like when my siblings argue over something not even involving her, she doesnt like fighting or arguing.

Now it is a month later and what is currently now, the week of steroids the doctor gave her worked for a while, she could see and stand a lot better. But now she doesnt eat and says that everything tastes different and disgusting and it is as if her mouth is covered in a waxy coating and food feels like it sticks to the inside of her mouth. Her headaches have turned into full blown migraines, she would throw up more often but because she refuses to eat nothing comes out when she gags. She cries at least once a day, if she even wakes up that day as she spends every moment in bed, except for going to the bathroom. I had to drop one of my subjects at college so I extra time to look after her, my dad cant do it very well as he has a range of problems like COPD and Pulmonery Fibrosis, he is wheelchair bound. I am not the oldest, but I am the one they all look up to, sometimes I leave the house for a few hours just so they dont see me cry, especially my mum, if she sees me cry she will lose all hope. At this moment in time, she just lays in bed sweating and starving in the heat, waiting for her lumbar puncture next month. I stay up late until every one has gone to bed just so I can cry to myself, everyone is in bed at the time I am typing this and now the tears are saturating my keyboard so I will get on with my question.

So anyway, she no longer will eat dinner because it tastes awful to her, she went today without eating anything. Has anyone else with MS experienced this and what can I do to treat it and so she can regularly eat solids again, It’s my cousins wedding on the 14th, all of my family will be going except for me and my mum, she cant move too well out of bed and she needs someone to keep her company and look after her, but I want her to at least have some of the wedding cake my brothers bring home, german chocolate which is her favourite.

Thank you so much for reading my ramblings, even if no one replies I’m just glad I got my thoughts out there.

I’m so sorry you are having to carry all the burden on your own, I really don’t know what to say or advise except I think you need to visit the GP for yourself. Explain the pressure you are under he may be able to give you something to help or arrange counselling. If you don’t look after yourself you will find looking out for your Mum so much harder. Does your Mums GP know the difficulties she is having if not then he should be informed. Try and get the family together and have a meeting to discuss the situation, you should all be working together to help your Mum and Dad at this difficult time it isn’t fair that you have all this worry on your own.

Take care and stay in touch.

Jan x

Something that comes through loud and clear from your post is that you feel that your parents’ problems are yours to solve. How much of that is self-generated, and how much comes from your having by unspoken general assent been quietly assigned this role within the family, I have no idea. But it will bring you to your knees if you are not careful.

Chronic ill health is a rotten business, and getting an MS dx is all kinds of filtered word - no two ways about it. And when people are mired in the shock and fear of finding out that there is something serious the matter with them, they can temporarily and understandably turn their atttention inwards for a bit, as they try to make sense and come to terms. Many of us who have MS (me included) will remember this well. What I can tell you, looking back at that, is that there isn’t a darned thing that anyone else can do about it. It is hard to watch someone you love suffer, but sometimes that suffering is a necessary stage that they have to work through, and it is not - emphatically not - amenable to the efforts of a concerned family member who is desperate to set things right. Some things can’t be helped. I think that this is an important thing for you to get your head around. You cannot make things OK for you mum and dad. Please, please remember this. However much you impoverish your own life, disrupting your studies, disrupting your own young adulthood, to try to save them, it won’t work. You can’t cut that kind of deal with fate. They have to find their own way through. Your loving encouragement can help them to do this, but you can’t do it for them. Don’t manoeuvre yourself (or let yourself be manoeuvred) into a position when you feel that you have to. You have your own life to lead.

Alison