MS Care Centre Spring Appeal

I was diagnosed with MS when I was 37, and I’ve had it now for 13 years. At the time, it was a big shock to the system. It greatly impacted my family too - my mother and father were devastated, and back then we didn’t really know much about MS. I had to pick out my own treatment, which was quite difficult to do. I used to inject myself three times a week, which I dreaded doing. But now I'm on an oral tablet for the past six, seven years and that seems to be doing me fine. 

I'm having many issues now with my bladder and balance. I've lost sight in my left eye, and the right one is very blurry too, which makes it difficult to see sometimes. I have swallowing issues as well, which is not good.  

It was the Centre, the Respite Centre that really saved me - because it took me seven years to really come to terms with this diagnosis. And at first, I was very adamant about not coming out here, you know, because I was afraid of what I'd see, like people in wheelchairs. But now it doesn't bother me coming in. Because I see the person, not the chair.  

I came to know of it through someone who used to work there - a lovely man. He came out to my house when I was really depressed, and he said: “Were you ever in Bushy Park, in Rathgar, at the MS Care Centre?” He said I should just go, it's like a little hotel where you're completely looked after. There are only twelve residents at a time, and everyone has their own private space. So, I thought: “Hmm, I think I'll try that.” And from day one, I just keep coming back. I love it. As soon as you walk through the doors - the TLC is just amazing in this space. Love it! 

Physiotherapy, the socialising with people from far and wide, which is a big thing you need. Because when you're at home, you're on your own - you know? So, it's just chatting to somebody that has the same diagnosis as yourself and who knows where you’re coming from. 

Ah yes! I can never get my MS nurse, she's never at her desk. Trying to get through to the neurology service is difficult too. To give you an example, I had to go into neurology last week because they didn't send the prescription that I need to my chemist. So, I had to go in myself to make sure that it was sent, and I was terribly stressed over this as well, because they had given me one on loan, and they know that’s the medication that I really need. But I got it in the end, but it was since September that it was supposed to be sent out and they only sent it out before I came in here (note: this interview was recorded in February). 

They can do basically anything for you here. And they can give you advice on what to do. Or they put me in contact with somebody that I need to get in contact with to get further support, which is really helpful. 

It's just amazing, it really is. I can't praise this place enough. I love coming in here because they're just there to listen to you. Here, I feel that I am being listened to, and I can ask anything I want without feeling bad for it. The Care Centre also really helped me to grow more confident in myself. Now, I will do anything they ask me, because I'm that bit more confident compared to when I first came here. I can say that the MS Care Centre is the best place to be when you’re feeling so low. 

Oh, I meet new people all the time. I've made friends with people down in Mayo, Carlow, Tipperary...from way down the country. I've made more friends here than I even did in school, to be honest with you. We exchanged phone numbers, and that way we can keep in contact outside of the Care Centre as well.  

We don’t want people to feel sorry, we just want support. And we need your support to keep the Care Centre up and running. We’re so well-looked after here, and the staff is so giving. It offers respite to everyone - I come here to get a respite because I don't have much help at home, whereas I’m trying to get my brother (who also has MS) to come here to give his wife a rest, because she does everything for him. 

I was diagnosed in 2016 – at the age of 26. It started with having pins and needles in my left foot and experiencing what’s called tonic spasms. I went to the hospital, and after some tests had been done, the diagnosis was clear: I had MS.  

I knew of MS, and I knew what it can cause. But I didn't know that it affected the central nervous system or anything like that. Mostly, I knew that I could live with it, and that was good enough for me.  

At the time, I thought I was dealing with it well, but looking back, I think I was in denial. But it takes time to fully come to terms with it. I think it really took years to accept it, also because each stage of MS comes with different symptoms. So, every time you have to discover your ‘new normal’, which might be different today or this month than the previous month. 

I deal with fatigue a lot and it's very difficult to manage as I work full time as a retail assistant, so my job is quite physical. My arms and legs are heavy, it feels like I’m constantly carrying weights. I struggle with fine motor skills in my hands, which can also be frustrating at times, more so because I look healthy and people cannot see what I am dealing with.   

When I’m fatigued, I'll sometimes struggle with getting my words out. My cognition is not what it used to be, and I think that symptom is the one that upsets me the most, because I used to be someone who considered themselves quite smart, but now I just don’t process information the same way anymore. It’s difficult to explain - I want to be the way I used to be, but I must accept that I’m not. And that is what hurts me the most. 

My family are very supportive of me, but I'm sure at times it can be frustrating – but what people don't realise is it's more frustrating for me. I'm feeling a lot of guilt for other people. For instance, I live with my sister and her family, and they’re so good to me and helping me with everything. I feel grateful, but I also feel guilty because I don't want to add stress to anyone else's life.  

I saw it on MS Ireland’s Facebook page during Christmas 2022. It was saying that there was a young person’s week coming up in February 2023, and I wasn’t sure if it was meant for me, because I am not in a wheelchair or using a walking aid. But I was told that any young person could participate, so I decided to go. 

When I got in, it was very overwhelming. When I got to my room, I saw someone in a wheelchair, and someone else with a walking aid. As soon as I was by myself in my room, I started crying. I felt so guilty again, thinking I had taken the space of someone who's at a more advanced stage of MS and who really needs it. I had all these negative thoughts about myself. But eventually, I started meeting everyone and I wasn’t the only person without a walking aid – actually, most of us didn’t have one.  

I've never gelled with a group as much as I did. As much as I cried when I got there, I bawled my eyes out at the end of that week because I didn’t want to leave my new friends behind. I've never felt a connection like that with a group of people – I call them my people. The staff is lovely as well, they’re all so supportive and understanding. 

We had a welcome meeting on the first day during which they gave us an overview of the week's plans. You have many options - they’ll book you in if you want to get your hair done, get a massage, do reiki... We also attend information sessions led by guest speakers about fatigue management, symptom management... It’s informative and so helpful. 

We also go on trips, like we go together to the cinema, or shopping. They make sure that you're still able to live your normal everyday life. There's so much that you get to do and enjoy. There's so much that goes into the respite - you get to do loads, it's like you're on a little holiday, but you also get the rest. And it's amazing.  

They cater to our needs by recognising that despite living with MS, we're still normal young people. So, as I mentioned just now - going shopping, going out for a coffee, they know these are the things that we want to do. And they make sure that’s possible.  

The first time I went there, I saw the physio and I got a detailed workout plan that I still use to this day. This helps by preventing the nerve damage from getting worse. I also met with the staff nurse, and she gave me the regional worker’s number. Even just for a chat, it helps massively being able to talk about your symptoms and check in with someone qualified who understands what you’re going through. 

It helped massively. I feel like the Care Centre has given me a new lease of life - I've become more independent from going there. Things that I would never have done, I was now doing by myself. The staff and the group of people I was with really gave me that extra boost of confidence.  

We all just gelled so well together. Although we're at different stages of MS, or we might have different symptoms, we all have MS in common, and we have that mutual understanding of living with MS.  

I'd say the Care Centre provides so much for so many different people at different stages of their journey with MS. And it changes people – it changed my life for the better, and it made me a more confident person. That one-week respite helped with my pain levels - before I went there, I'd say it was at 90%, and when I was left, it was nonexistent. My anxiety was also reduced massively. So, I think it’s important for people to know that when they donate, they’re not just donating to a building, they're donating to everything: the physio, the people that they get in to provide services for, the mediation, the yoga, the tips on how we can manage our everyday symptoms, feeling part of a community, part of a group. It truly changes our lives. 

It’s not just for us, it's for our family members, for the people who care for us. Especially for those of us with the invisible side of it, it also gives a break to our own unpaid carers at home. The Centre provides support for everyone, at every stage of their MS. 

I would say take your time. You're going to go through different stages of grief – I still do that. Your life isn't over, but it's also not the same. I would tell them that however they feel, it is valid. And maybe to reach out to the younger people’s respite stay or find a younger group of newly diagnosed.