No new lesions - woohooo!

I have wanted to write a blog for a couple of weeks now and thought of a few different ideas but just didn’t write them. I don’t like to write a blog for the sake of it because it’s not very useful to people and that’s the whole purpose of my writing really.

I was going to write about stress and MS, am I clumsy or is it my MS and how to bring my MS into a conversation for awareness rather than sympathy. But then on Saturday I received a letter from the hospital about my recent MRI scan and found out over the last year I have had no new lesions – wooo!

For anyone not in the MS world, this means the treatment I am on has been working and it’s stopped my nerves getting damaged. A new lesion means a relapse so it means I haven’t had any sort of relapse in the last year (hidden or visible). I get a MRI scan every year to monitor it.

This has been a massive relief for me and I’m really happy how effective the treatment has been. Although I’ve had some side effects since going on the treatment (the main one developing an over active thyroid) it has been the best option for me and how my MS affects me.

The treatment I was previously on had stopped working and I had a couple of relapses so the consultant decided to change it. This was the best option for my age and it meant I didn’t have to take a tablet every day. It also meant that when I was ready to start a family I could without having to change my treatment plan. So, it was the best decision for me and others around me.

Looking back to nine years ago when I first got diagnosed, I was lost and frustrated, and I didn’t think there was much of a future for me. My life could have been totally different if I didn’t listen to the advice from my consultants. I feel healthier than ever and let’s hope I’m saying the same thing in 10 years time.

The four stages of MS

In the last seven years, I’ve went through a few different stages of how I’ve felt about the illness. Since it’s an unpredictable illness, one day you could be fine and the other day you could be poorly so you kind of change your mind on it all the time. Here’s the main four I’ve felt over the last seven years:

Denial

I would say that this is probably a stage that everyone with MS goes through. When the doctor tells you the bad news, you think, no that can’t be true, they’ve probably just made a mistake, I’m too young for this. I thought that for the first year. I didn’t tell people, I only told people I was close too and that was it, it was a bit embarrassing if I’m going to be totally honest. I think it eventually sunk in when I was about 19 and I had eventually realised I had it and there was nothing I could do so my attitude changed.

Acceptance

That brings me onto acceptance. This is probably the most important one because it helps you move forward with your life. I remember when I really accepted I had it and started looking at groups I could join and other people’s experiences on the MS society website.

I then started telling people. Not just out the blue of course, but if it came up in conversation, I would tell them. I got a few weird looks and comments like I’ve discussed in a previous blog post, but it was better than hiding behind it, but if anyone knows me I’m like an open book so it doesn’t take me long to tell everyone I know something!

Hope/optimism

This is probably the best one, you eventually get your purpose back and decide there’s more to life that just moping around.

When I became optimistic about it was when I started to do charity events. I had never really had something I felt passionate enough to raise money for until I got diagnosed so I thought, I can do this, and I can help make a difference.

I’m going to be corny here but the new Sigrid song, don’t feel like crying is a good listen if you’re feeling down – you can guess what it’s about by the title!

Determination

Determination is such a good feeling. You feel like you have purpose when you’re determined to do something. I created this blog as I was determined to help people with MS. I ran the GNR because I was determined to raise money for the charity. I go to work everyday and get on with things because I’m determined to make a difference in my job and not let the illness get me down.

The feeling of determination makes you feel like you have the illness rather than the illness having you!

Telling people you have MS

I hate telling people I have MS. Not because I’m embarrassed, or I want to hide it, it’s just hard to explain to somebody who doesn’t know much about it. People have perceptions of MS and the reaction you normally get from someone when you tell them is:

• But you’re not in a wheelchair…
• I would have never have guessed, you look fine (looks you up and down)
• I thought only old people got MS

If anything, it’s more of an awkward conversation and no matter how much you explain it, only other people with MS will really know how you’re truly feeling - just like any illness, I can be as sympathetic as possible towards someone who has broken their leg but I’ve never experienced myself so I don’t really know what they’re going through.

When I was first diagnosed my nurse told me ‘you don’t have to tell anyone you have it if you don’t want to’ so stuck to that for a while in exception to my close friends and family. But last year I started seeing a boy who I was starting to really like. It was at the same time as I was running the GNR for The MS Society so I felt it was a good time to tell him. It was at a good stage in our relationship where I would understand if he wanted to walk away at that point, but at the same time I would have been gutted if he had.

Of course, he didn’t and we’re celebrating our first-year anniversary this weekend and I couldn’t have asked for a more supportive boyfriend – cheesy!

I’m lucky enough to have a group of supportive friends and family who are always there if I need to talk. However, I tend to not bring my MS up with them that often as I don’t want sympathy from anyone -but I do think it’s important to tell people how you feel.  

I suffered a relapse earlier this year which meant I couldn’t drive, type or answer the phone properly at work. Someone then told me about a scheme called access to work who assess your working environment. This meant that I was able to get the support I needed. A few years back I wouldn’t have admitted I needed help but as I’ve grew older I’ve realised people are there to help you, like you’re there to help them if they need it.

My point is, as it becomes more and more common with younger people, we must take advantage of the people around us as those are the people who will help you stay sane!

Let's start with the basics...

Your twenties is hard enough to begin with but knowing you’ve got multiple sclerosis, it makes it a whole lot harder. Hi I’m Racheal and this is my ‘blog’.

I lead a normal life, I’ve got some crazy friends, a boyfriend, a loving family and a social life, which sometimes I can’t even keep up with, and I have MS. 

I was diagnosed six years ago but this year is probably the first time it has really impacted my life so I thought I’d give blogging a go to speak to people going through the same thing as me. 

I was first diagnosed just before my 18^th birthday when I lost the feeling in my legs and then my arms. I’m pretty lucky because those are probably the worse symptoms I’ve had. I have a MRI scan every 12 months and on my last one my consultant noticed there was some new lesions on my scan meaning my current medication (gilenya) wasn’t working. This is when we decided to change my treatment to alemtuzumab – to prevent anymore new lesions appearing on my brain. 

First I had to come off my old treatment (gilenya) so it would be out of my system before my new treatment could start. This meant my previous relapses came back to ‘cripple’ me physically and emotionally. Once I was ready for my new treatment I went into hospital for five days as a day patient. I had plenty of visitors and read two books so you would think it was a walk in the park but it was not. It was hard. Having to let your boyfriend see you with a rash all over your body (just one of my side effects) is not exactly romantic but my illness is something that I have to live with and changing treatments to improve my quality of life is just a small part of that. 

My treatment is now fully in my system and I feel healthier than ever. I can exercise again (something I will touch on at a later stage) I can go to work without feeling useless and I can enjoy spending time with friends and family without feeling poorly and tired. 

I don’t want to go into too much detail since this is just my first post and there’s plenty more to come so I’ll leave it there and speak to you next time xoxo