My MS nurse...

I thought on this post I would talk about my MS nurse, well my previous nurse who has recently retired.

From the age of 18, she has always been my first point of contact and until last month I seen her at least every three months. There’s no other way to describe Barbara (my nurse if you didn’t guess that) than a straight to point, assertive and a ‘hard as nails’ nurse. I would go in for a check-up and before I know it, my next appointment was booked, my MRI was checked, and I was getting my bloods taken. She was always on the ball sometimes before I even sat down.

She was not your typical nurse though. She was ex-army and you can definitely tell… She was determined to make sure MS was not a hindrance on anyone’s life and she made me believe I could fight it from day one - her patients were her main priority.

I think I was one of her youngest patients, so I always felt she wanted me on the best treatment to make sure I could live like a normal person my age. The first day I met her she said I promise you this will not affect your life, we will continuously find the best treatment for you.

So far, she’s been right, as I’ve explained in previous blogs, I’m really lucky to only have had four main relapses and that is thanks to the continued support of Barbara and the rest of the team at Sunderland Royal.

I’ve always found it useful to have a point of contact like that as when you go to the Doctors, they aren’t specialists, so they don’t really know what you’re going through but you can mention one problem to your MS nurse and they’ll explain why that is happening.

Before Barbara retired, I went to see her for my last appointment and to say my thanks and farewells. I bought her a present to say thank you for everything she has done, and anyone who knows or has heard me talk about Barbara would know she’s not the softest, but I seen the real caring side of her when she actually got tearful and said she can retire happy knowing that she has helped me live a better life over the last six years.

Anyone who knows me knows that I was obviously an emotional mess at this point…  

After all the years, Barbara worked for the NHS I hope she’s enjoying her retirement because she deserves it so much. I meet my new nurse next month and I’m sure she’ll be as good – wish me luck!

If anyone else has had a similar relationship with their nurse or doctor, please let me know. You always read the negative stories about the NHS but really without these people we wouldn’t have a free amazing health service so it’s nice to thank them for their hard work and appreciate them whenever we can.

Dealing with Multiple Sclerosis and relapses...

There’s many types of MS - primary-progressive, secondary-progressive and relapsing remitting. I have relapsing remitting which means I suffer from relapses.

 A relapse is defined by healthcare professionals as - Old symptoms of MS worsening or new symptoms appearing.

Instead of depressing you on how tough a relapse is, I’ll tell you some of the funny stories from some incidents that have happened when I’ve had a relapse. 

I’ve had four main relapses so far – two before I was diagnosed and two after. When I was 16, I lost the feeling in both of my legs, I couldn’t walk properly, and I would get a pins and needles sensation. At this point I didn’t know what was going on so didn’t really know what to do. One day I was at church and I had to go up to the alter because I was making my confirmation that year. I got all the way down to the bottom and looked at my feet and realised I only had one shoe on… Tip number 1 never wear little ballet pumps when you can’t feel your feet, they won’t stay on!

Then a couple of weeks later, I still couldn’t feel my legs when we went to Light Water Valley. First ride we went on was the Ultimate and as it started it broke down! We got passes to go on later in the day when it was fixed so me and one of the girls decided to go on before we left the park. The bus was leaving in 15 minutes, but we thought we’d have enough time… we did not have enough time and ended up running back to the bus - well she ran I had to walk extremely fast and it looked like my legs were about to fall off! Tip number 2 don’t run across a theme park when you can’t even walk!

Then when I was 18, I lost the feelings in my arms and my hands were crippled, I couldn’t hold things, write or type. We went to the Ice Bar while we were in London, we decided to get a cocktail each which wasn’t the cheapest drink I’ve ever bought but guess who dropped it all over – yes me! Tip number 3 never buy expensive drinks when you can’t hold them!

Then earlier this year my old relapses came back when I was changing treatments. I lost the feeling in my right hand and my left leg went. At the time me and my boyfriend were on holiday in Texas so this stopped us walking up the Enchanted Rock – I think he was secretly quite happy about that though! The relapse got worse as the holiday went on and I would get a spasm every so often when I was sleeping and would either kick him or throw the quilt off him. I don’t really have a tip for this one except tell your boyfriend to stay in a different bed when you lose the feeling in your leg.

Although relapses are hard to deal with, I always think it’s best to make the best of a bad situation and laughing at yourself always helps!  

It’s okay not to be okay…

Today is #WorldMentalHealthDay something until recently has never been a big thing. I think in the past, people have never realised how important it is - I'll admit I was one of those people...

But when I relapsed earlier this year I realised ‘wow shit’ this mental health malarkey can really affect people, and this is when I realised it’s just as important as your physical health.

I was angry and upset, I didn’t realise at the time, but I was a mess. I didn’t want to get dressed up, I wasn’t bothered about talking to people, I was getting angry over stupid things and I was generally down, but I was trying to be strong so I would never admit that I was struggling.

Then one day I woke up and felt a lot more positive than I had been, so as pathetic as it sounds, I washed my hair put some tan and make up on and went out for a walk with two of my best friends - the littlest thing made me feel 1000 times better. 

You’re not always going to be smiling, even if you’re the richest person in the world but I think it’s important to realise how you feel/act when you’re not okay. I get angry, I go quiet (which is very unusual if you know me) I get upset to the point where someone could say something to me and I would burst into tears. This is when I know I need to take myself away from a situation and do something  I enjoy – the gym is probably my go to place when I feel down.

I’ve always been quite a positive/optimistic person, even when I was diagnosed with MS, I didn’t really think too much into it but at the time I was young and had other things to think of. 2018 has really been an eye opening to me and I’ve now realised just because someone has a smile on their face, doesn’t always mean they are in a good place!

Whether it's a relative, a friend, a GP or a charity like M.I.N.D, there's always someone to talk to even when you think there's not. 

Remember mental health is just as important as your physical health and it’s okay not to be okay - be kind to people because you don't know what's going on behind that smile! 

The hangover with MS

I thought this would be a good day to write a blog about hangovers since most of us might be feeling a bit rough today. 

We all get a hangover after a heavy night, whether we’re sick or our head is banging or we have a funny tummy - our bodies naturally don’t cope well with a lot of alcohol. 

Since I started drinking, I’ve always had bad hangovers but over the last year they have got a lot worse since I’ve been on a new treatment. I usually get a really sore head, tingling sensations through my body  and get extremely tired. However I can’t completely blame this on my MS as it’s just one of those things when you have a lot to drink and are dehydrated. 

Recently I have started to get water infections the day after as my body is still dehydrated from the night before. Those who have had water infections will know how annoying and uncomfortable they are. The niggling pain starts to burn and then it’s the constant running to the toilet although you don’t need it. 

ANNOYING

Still working on why this happens every time I have a drink, whether it’s related to my treatment or I am just prone to water infections but hopefully i can get something that can help with the pain. Either that or I’ll just have to stop drinking... 

I mean if anyone knows me well they know I won’t stop drinking haha!  

My top tips are eat something so there’s something on your stomach. Drink plenty of water and have a nice hot bath and put some never pjs on and get someone to give you sympathy- that always helps! 

I think the best thing to do when you’re hungover is know that you’re allowed to rest and have a lazy day.

I’d love to hear from anyone else with MS and how they cope with hangovers and drinking 😊

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!

Keeping myself fit with MS

Happy Great North Run Day everyone!

I thought today was a good day to talk about how I incorporate fitness into my lifestyle since it's GNR day. This time last year I had just finished my first Great North Run, something I thought I’d never be able to do since I’m not the strongest runner. It was the best feeling in the world though knowing I’d ran all that way for a charity that means the world to me – The MS Society.

I raised over £1,100 for the charity which was a lot more than I expected when I signed up. It was an amazing experience and I entered again this year but sadly had to pull out due to a relapse earlier in the year…

Fitness has always been a big part of my life. In primary school I was on all the sports teams, secondary I was a swimmer but then when I went to college I stopped exercising when I was diagnosed with MS, put on a lot of weight and become lazy. Then I went to university and decided to join a gym and get fit again. Now I go to the gym 3-4 times a week #fit

I don’t just go to the gym to keep the weight off although that helps as I eat a lot of food!! I go to the gym to relieve stress, to challenge myself and most of all because I enjoy it.

People forget how important it is to do something that relieves stress. Without the gym I know I would become anxious, angry and stressed so I try to go when I can without pushing myself too much.

I usually do 2 x weight training sessions, 1 x spinning and 1 x run a week which I feel is a nice enough balance to work different parts of the body. I usually can tell whether my body is tired from exercise or when my body is tired due to my MS (I normally get tingly legs) so I try to slow down when I can.

It’s important to get a balance and to listen to your body especially when you have MS. Everyone gets tired but when you have MS tiredness and fatigue is much more common and you feel like it’s your biggest weakness. But what I’ve learnt is it’s okay to go to bed a bit earlier, it’s okay to not want to go out until the early hours of the morning and it’s okay to stay in you pjs all day.

Sometimes we need to rest and recover – we’re only human!

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