I think the business of getting as much information as you possibly can is absolutely vital if you don’t get information, you can’t take any action and if you can’t take any action you become a prisoner of your own caring situation. It’s difficult enough being a carer, nobody pretends it’s easy why do we do it, we do it because we love the person were caring for I think or perhaps in extreme cases you feel a sense of bounden duty I don’t know. But unless you do what I suggest in terms of getting in touch with social services, appropriate medical advice magazines that deal with the subject and MS Therapy Centres and MS nurses you won’t know what resources are ready for you to use and what opportunities are open to you. Now when I compare it with the way it was 30 years ago for my wifes mother, practically nothing of what’s now available was available then so were very lucky really, very lucky indeed.

Just find as much information as possible. Read everything that there is. Try and talk to someone who has it, who has MS. Talk to, definitely a friend who supports somebody with MS. Just try not to worry too much and there is so much that is being done for MS sufferers and they will live a long time. MS sufferers do live a long time and they are lucid and just ride out the fact that occasionally, they will be tetchy because it is very frustrating if you are, one year, you could walk and the next year you find that you can’t or you can’t use your hands in the same way. Writing may be difficult but I, people who have MS are definitely in much better shape than they were twenty years ago. There is so much which is done for it and it is and it is a disease or an illness which people are finding ways in which to cope with it. People do cope better with MS than they ever have before. It has so much support and theres so many people who are willing to help you out. I mean you don’t, I with this I’ve never felt that I was actually alone dealing it, never, not for one day. Theres always been somebody who has it or somebody who knows somebody who has it and there are so much you can, so much so many places you can go to find information and so much help you can get, so much help.

Caring is incredibly hard work both physically and emotionally and I think it’s sometimes very difficult for carers to say, Stop, look at me, I’ve got my own health needs. Because they are so aware that the person they are looking after has so many more health needs. And I think we need to sometimes as health professionals focus more on the carer and ask them how they are doing, how they are getting on, how they are coping and if there is anything they need to help them. And similarly I think carers maybe need to prioritise their needs sometimes which is difficult for them to do but it is very important that they stay healthy and well and as cheerful as they can be while they are looking after the person with MS.

Nobody need travel this alone, but you have to swallow your pride and say, I need help and, and find the people that are there for you. So many people will say, Oh, you know, you know you can always call me or, or, you know, Don’t hesitate to give me a ring if theres anything I can do. And that in itself is, is helpful. But it’s not half as helpful as actually calling their bluff and asking them for help.

And ironically, the more capable you are as a person, the harder that becomes to do. But I’ve never regretted it when I have asked for help. Because people actually see it as a compliment that you, you trust them enough to be vulnerable with them, to admit that you need the help.

Like, you know, there was one time, I strained my back because I’d been nursing [name] and, I’d been nursing my husband and I’d overdone it. And so I needed somebody to do the driving for me for a few weeks because I was in too much pain to drive. And the person I asked to do the driving was delighted to be able to help and would have felt dreadful if I hadn’t. So, you know, they really do appreciate you being honest and open, as well as giving yourself time to recover from whatever it was that you needed help with.

I don’t think there is any one answer to the treatment, management and living with MS. I think it’s about identifying your local support, your local services. Utilise them. Don’t be frightened of picking the phone up. It’s not just about drug treatment. It’s about therapies, it’s about complementary therapies, alternative therapies. And, you know, it’s about thinking outside the box quite often. So just keep communicating with the services that are available to you.

Just talk to each other. You know, don’t isolate yourself. Don’t assume that it’s you that’s, you’re the only one that’s living with the MS. Your whole family is living with it. And the, the one thing that I, that I say to many people is, Be your own best friend. You know, if you, quite often it’s hard to sort of, to give yourself advice or step outside yourself and be your own best friend. What advice would you give to your best friend, if you’re struggling with the situation. And quite often it’s much easier to do that.

My own advice would be for people to talk to people if you can or to, you know, to people who’ve got MS or who’ve been through that, finding out how they’re coping, you know, finding out about their experiences I think is absolutely vital. I mean, I never met another person who had MS at the time. I never met anyone else who was caring for someone with, or with any illness but certainly not with MS.

None of our family, none of our family and friends were poorly at the time and so there was not anyone else to talk to about it and I would, yeah, I think being able, being able to have that opportunity to talk to someone or to find out how other people have coped is, would have been so much help for me at the time. It would have been so much help for all of us, I think, and so you don’t feel so on your own. You don’t feel so isolated, don’t feel so scared perhaps and then having the opportunity to talk, you know, to talk through your worries as well, rather than being made just to cope on your own. It was yeah, it’s yeah, it really would have helped so much.

Hang in. Do the very best you can and don’t be frightened of it. Any disease of any sort is going to hit everybody. Were all going to die and it’s not going to be wonderful. The lucky ones are the ones who have the spontaneous heart attacks. The rest of us dribble. We dribble away and we just have to accept that, no magic numbers and just get on with it because it’s not going to go away. You can’t, you can’t go to bed and think tomorrow’s going to be back to, you know, move round the clock because tomorrow is just going to be one more day down the line. So you might as well be happy and enjoy it and have a laugh, be kind, be really, really kind and be generous and it doesn’t really, it doesn’t hurt at all to tell a joke while you’re cleaning a suprapubic catheter.

It’s not as bleak as a lot of people think. Like I’ve said repeatedly, the, the closeness of our family, and the friendships you develop as well, whether, whoever they’re with, age, illness, health does not matter. People have such a, a broader view on life. People aren’t as materialistic. The, the friends you will get through being involved with charities and things like that, 99.9% of the time you could not meet people with better hearts or minds, because it really, like, I go to my young carers’ group and the friends that I’ve got there, you know, you don’t mention about caring, you’re just there for fun. You’ve it’s been a good release for me, but at the same time it, it’s also meant that I, it’s an avenue where I could help others and things like that.

And I just, I wouldn’t change it for anything, I really wouldn’t. I genuinely mean that. Like a lot of people say, Oh of course you would, you know, you wouldn’t say that with your mum or… But, no, it’s made me a better person. I’m sure it has. It’s made me, mum and dad closer. And it’s meant the friendships that I’ve developed are more meaningful. It’s meant that the career path I’ve gone down is more substantial. Like I wouldn’t have had any idea otherwise, I’m sure I wouldn’t. And it just, it’s just given me a completely different outlook on life to what I think I would have had. So I certainly think that you get a lot more out of it than you necessarily have to give.