adapting to life with ms

Hi, I’m feeling low. Before ms I used to play the violin in a group every week. I used to go walking in the howgills on my days off during the week. Did challenge walks, took part in dragon boat races. I enjoyed life. I loved photography, loved reading too. Now I can only walk a couple of miles. That’s with rests and snails overtaking me. So no more long walks and I no longer see those that I went walking with. I have pain and stiffness in my hands so struggle to even do a basic scale on the violin. Can No longer play with a group. My eyes go misty or blurry a lot and my concentration is pants so reading is out as is photography. Can’t focus or hold a camera steady and my reaction time is so slow. Feel like I need to change and adapt but I’m finding it hard. What interests did you have that you’ve had to change? I’d welcome any advice ? Thanks Lynn

Hi Lynn, I’ve had to totally ‘re-invent’ myself. I was a keen walker, went camping and generally had a zest for life. These days I can just about walk to the car. I’m more or less a power chair user full time. I’ve had a gradual decline from RM ms to now SP. It has been hard, there are times when I get really angry and frustrated about this disease. My excitement now is going out for a coffee if I have help and the energy. Still working full time as a financial necessity is a killer and I have to pace myself, making sure I don’t run out of spoons! ( Google spoon theory!) I’ve got into alternative healing and meditation. I’m a Reiki and crystal therapist. I hope you can find other stuff to thrill you, life is for living to the best you can be. We may have to find new ways to get a kick out of life. Good luck! Sara

It’s hard isn’t it… On good days I try to look positively about the changes I’ve had to make - I now go horseriding which I’d never have dreamt of or had time for before, I play in a drumming group because I now find it too hard to concentrate on reading music (used to plat flute/piano). Instead of going for long country walks I enjoy finding local managable walks and have met many different people through doing this…

I miss working,I miss studying, I miss the ‘friends’ who’ve fallen by the wayside,I miss being healthy etc…

I think what I miss most is being ‘normal’ - but I have learn’t that I am normal and that I have to accept and appreciate this new definition of normal…

Take care. Carriex

Hi Tonka

I used to be really active and my life changed but mine was gradual over many many years , but i still go out with the camera and on wobbly days i use my quadbike somethings i cant do anymore but i look at it that new doors will open and my path will be slightly different , i now use a tripod and shutter release all thee time and always use burst mode then i stand more of a chance getting at least 1 good shot i also play my guitars badly i might add though there are times it hurts but i make a point of playing at least once a day normally before i sleep , i no longer get out fishing or get out on the sea , i also no long volunteer for the SAR scene but i volunteer for biking organisations and as long as i can help someone im happy.

Like i say ive had 14yrs to steer my path different something will come up just gotta stay positive and remember your still you a new you

respect sheep x

Hi, I spend all day, every day, sitting in a riser/recliner chair in the lounge. The only exercise I get is using my power chair to get the 5 metres from my chair to the downstairs loo. I have no one to talk to. I read a lot about stuff I’m interested in, but my husband tells me I should read story books instead. My husband works full-time in London, staying over two nights a week. We have two boys (13 & 10). The eldest is very good, if reluctant and occasionally hurtful, about helping me out. The youngest refuses to help point blank. My husband takes the boys swimming on a Saturday morning, then spends the afternoon sat on the bed with his laptop, only coming down to make tea then join us to watch TV in the evening. On a Sunday our youngest plays football. My husband takes him to his match then it’s basically a repeat of Saturday. My life is now spent sitting in the lounge on my own with no one to talk to, with no one wanting to go anywhere with me. I’m just seen as a burden. Having MS has allowed me to see others in a new light. When I out-lived my usefulness I was simply disguarded. My Mum died last year and I inherited some money from the sale of her house. I’m paying to have a lot of work done on our house, but I’m mindful that what gets done has to be more suited for my husband and boys - my husband thinks he’ll need to rip out and replace any adapted stuff once I’m “not around anymore”. I’ve been feeling very low for quite a while. I just feel abandoned and left to get on with it. Heather

Heather,it really upsets me that your husband treats you like this,its not your fault you have ms,he should be ashamed of himself,havent you anyone to talk to,can you get social services to arrange direct payments to pay for someone to take you out now and then at least,

i myself am housebound but my family treat me right, ok things get fraught,at times,but thats to be expected living with ms like ours,i have had to adjust to being housebound,it was either that or spend most of my time depressed which i refuse to do,and we have our rows quite often,and i let them all have it,if they take advantage,i tell them i still have needs and like my own space,which i get a lot of,as my partner works 2 days a week,and plays golf often,i see my little grandaughter most days and that brightens up my day,

please look into getting some help,its not right.if you need to talk you can send me a private message anytime.

J x

Hi Heather, that sounds terrible. I have a brilliant daughter. I’m aware that I’ve lost friends when I can no longer walk miles,or stay up past 8 and go for a drink. My husband is not supportive though he never has been. When I was taken into hospital to start with he said it was wasting his day off so I told him to go. He said he doesn’t do ms ( lucky he hasn’t got it then) says he won’t change things with the house. He wants to have his house back to himself. I still live there with my daughter. We don’t fight but its hard in itself. I went out with mike for 3 years and we planned to live together with my daughter ( husband knew and was happy that we’d be out of his way). Got my diagnosis and mike moved away. I know his mother had a problem with me but I do think the ms helped him decide. I can’t see a way out at the moment. I don’t want another relationship. The money your mum left you is yours. Use it for yourself, either treat yourself or get something you need. Hope things improve.(((Hugs))) Lynn

Hello Lynn

I’m really sorry to hear your struggling so much with your life. It is upsetting not to be able to do the things you love.

I used to voulunteer for the red cross but it became too much for me.

I’m trained in Reiki healing, so I just concentrate on that at the moment. Meditation help too.

I hope you find things in life, that help you.

Take care x


i feel for you- i do but you will find ur way of coping.

i am a reiki master and too have found that invaluable in helping me to cope-with my own issues and also enabling me to help others…

i used to knit hats prem babies-cant hold a pen or knit now so u find new interests. i am writing a book! as have already said i cant write so scribe comes to house and we get there. today my carer took me to see my friend who is also very poorly with ms-both of us shattered but we will do again!

be realistic and find ur way-it takes a while and is constantly changing/adapting but there will be a way. prob not the one u r used and u may find 99 ways that dont work then the 100th will

ellie x