Susan was diagnosed with secondary progressive MS aged 51, here she talks about the positive impact her MS nurse has had on her well being.
Sally Fox is an MS nurse who works in Bradford. She was one of the first MS Nurses funded by the MS Trust’s Specialist Nurse Programme. Here one of her patients, Susan, talks about the positive impact Sally has had on both her physical symptoms and also her state of mind. More nurses are desperately needed across the UK to ensure people like Susan are not left to manage their MS alone.
I'm Susan, I'm 51 years old and was diagnosed with MS four years ago. It's secondary progressive MS, so it's not going to get any better. However, I do think a positive outlook is really important. I've still got a lot of life to live. I’m only 51, I've got two lovely little Grandkids and I want to play with them. I've looked forward to being a Granny so much, that I'm going to be a Granny no matter what. It’s not always easy to have that attitude and I’m still trying to accept that I've got MS. To begin with I thought ‘I don't really fancy having this’ and I tried to ignore it, until it became impossible to ignore.
Since being diagnosed I’ve slowed my life down a lot. MS has made me stop doing some things the way I used to do. I can't thread a needle or sew buttons on as quickly as I used to, and at first it made me so annoyed and mad at myself. However, I've now got a new sewing machine that threads itself which means I can still sew. MS is like a mind game. It can rob you of how you feel about yourself and make you feel not good enough. You've got to try and think of ways to get around what you can't do, to improve your own self esteem. That's what I'm learning this year, I’m working around what I can't do, and making myself realise what I can do is important, and it’s better than doing nothing at all. It's not easy though.
MS is like a mind game. It can rob you of how you feel about yourself and make you feel not good enough.
One of my main symptoms is tiredness and it’s a tired that you can't go to sleep and wake up and it's gone. It's the tired that’s with you all the time. My other main symptom is my coordination. I can't do things like I used to. I try to pick up a coin or something similar and I can't get hold of it. I’ll try to pick up my coffee cup and I've got to really concentrate and think about it. I find I’ve got to overthink things before I can actually do them. So when people see me and think, ‘Oh it's okay, she's coping, she's doing alright’, I’m actually taking five or 10 minutes to really think a situation through before I can do it. Everything in my life is thinking ahead, otherwise I can't keep up. That's when the MS will show up and make me feel that I’m not as good as everybody else. I don't want that, I just want to fit in.
When I got diagnosed, the consultant told me to go and look it up on the internet, which I couldn't do because I don’t have a computer. I asked if there were any leaflets on it and was told no, there isn't. So I went away and pretty much went into denial. But then life started getting really hard, I was dropping things a lot more, I couldn't sew, and everything I valued in life felt like it was being snatched away from me. My walking was terrible. I wasn't sleeping at night, I couldn't sleep, but I was so tired. I got to the stage where I just thought, if this is life, I don't really want it anymore. My previous consultant at the Yorkshire clinic was no longer in post, so I went to my doctor and I asked for a new consultant. He told me it would take at least 18 months to two years. At that point I just said, ‘Well, I'm not going to be around that long. You might as well go outside and dig a big hole, because in two months I'll be in it, I can't cope.’ I just really wanted to lay down and go to sleep and not wake up again.
I just really wanted to lay down and go to sleep and not wake up again.
Following that appointment my doctor must have got in touch with St Luke's, as the next thing I knew in January, just before my birthday, I got a call to come and meet Sally. The past few months had felt like I'd been thrown in quicksand and was drowning. But finally, with Sally, I could go and tell her all of the things that were wrong with me, all the things I couldn't do any more, and all the things that have gone wrong. I told her I felt like I had been drowning and I’d just had enough.
Basically it felt like I couldn't breathe, nobody to turn to, nobody to tell and I didn't know whether all these things that I was feeling were normal or not. It was such a relief to see a lovely face. She sat and listened to me and I told her all the things that were wrong and we started dealing with them, one at a time. It was such a relief to be able to tell somebody and feel that all these things that were so abnormal were actually pretty normal because of what was wrong with me. But I didn’t know that. Nobody told me and there isn't a rule book.
It really helps to have somebody that can guide you through MS. It’s a bit like going up a mountain without a guidebook. The nurses are there to help pull you up and put a safety rope around you and show you the way.
What people don't realise, is that MS isn't just nine to five, you've got it all day every day and at weekends too, you don't get weekends off. So when you're laying down in bed at night, worrying about this, or worrying about that, every little niggle gets bigger and bigger. Having a set of phone numbers you can ring in the morning is so important. Just knowing that this team of people are there for you. No matter how big or small your problem is. Either they'll make an appointment to see you or they'll just ring you straight back and talk to you. Just knowing that they're there and will help you is a comfort.
I rang Sally to tell her I’d had a bad fall and I was getting to the stage where I didn't want to go out, because I was frightened of falling again. I'd fallen in the road, without anything to hold on to, to get me back up. I was lying in the middle of the road for about 20 minutes, which was very frightening. She arranged for me to see a physio and we practiced getting up from the floor without anything to hold on to. It took a couple of goes, but now I know that if I fall I can get up again.
Sally gave me the initiative to pull my socks up and think, I can claim back some of my life. I might not be able to get back to what I had before, but I can claim back a bit for me. She's given me back my life.
She's given me back the incentive to think, oh yeah, I can live another 25 years. Yes I can get up and dust myself down and have another go.
People who haven’t got an MS nurse must feel exactly how I felt before I met Sally. It must be really scary and frightening for them to have all these emotions and feelings and not have anyone to discuss them with. I can’t imagine what it'd be like to deal with them all on your own, without someone to guide you through it.
I think the difference that Sally has made to my life is that she gave me hope that I can actually have a life.
The ADAMS project
25/05/2022 - 00:00
Dr Benjamin Jacobs spoke to us about a new study on the genetics of MS in people from minority ethnic backgrounds which may eventually shed light on why MS can be more severe for Black and Asian people.
Roxy's journey to diagnosis
16/05/2022 - 00:00
Roxy talks about her MS journey and the importance of sharing her own experiences to ensure that others don’t face the same challenges when receiving a diagnosis.
Lis' MS journey: one woman and her bike
04/05/2022 - 00:00
In May 2022, Lis will be heading off on her 5,000 mile cycling challenge. She shares how the idea came about and discusses why the support of the MS Trust was invaluable following a multiple sclerosis diagnosis.
Sign up for updates from us
Keep up-to-date with the latest MS news, explore new research, read the stories of people living with MS, find out practical tips from MS experts, and discover exciting fundraising opportunities.