Your disability is your superpower

 Now that Love Island is back on our screens, I thought it was an appropriate time to do a blog.. if you’re thinking of stopping here because you don’t watch it, fear not it’s not my view on the first episode…

This year they decided to announce there was a deaf contestant joining the villa. Many people like myself probably thought this is great news to bring in a more diverse cast. I wondered how they would tell other contestants, would they just know or would there be an announcement? Well last night, Tasha pulled all of them by the fire pit to tell them about it and described it as her ‘superpower’.

I loved how she did this, there was no shame towards it and you could tell she just wanted to get it out the way so that people didn’t ask questions or she felt uncomfortable. I loved her attitude towards it and I feel like it’s not something to be ashamed of, she seems to have such a positive attitude towards it. 

I’m always quite open with telling people about my MS when its appropriate. My life is slightly different than getting in a villa with a bunch of people but I think it’s important to tell people about disabilities so they can fully understand how it impacts your life. However I don’t pull people for chats around fire pits, more likely on a team call…

I assume they’ll be some conversations within the villa about her experience and people will want to learn more about it. I always like when people ask me about my MS, I don’t expect people to know, why would they? I’d rather get asked than them being scared to say the wrong thing.

All disabilities are different and I think if you’re quite positive about them you deal with it better generally. I sometimes forget I have MS unless my body reminds me about it. Your disability doesn’t define you and I’m excited to see how ITV adapt the show for Tasha. 

 

Starting a new job

Starting a new job can be daunting at the best of times especially when your new job is mainly working from home. It’s weird not being in an office all the time meeting people and having those random conversations you do with your new colleagues but it’s now the world we live in and a lot of people have done it over the last year too so I’m not alone. 

Starting a new job for me is exciting, I like a new challenge and to be out of my comfort zone, but I do always have in the back of my head, I’ll have to tell them I have MS and how do I do that. There’s enough stress starting thinking I hope my team like me/ I hope I’m doing a good job/ I hope I don’t make any mistakes without having to tell them you have MS. 

This time though it was weird because this blog was part of my application. As I work in PR and marketing it made sense to include my blog as evidence of my writing so in one way I didn’t actually have to have that difficult conversation with my manager. 

It was a good way to then start the conversation and I feel like it took the pressure off. Since starting the job I’ve spoke about it when I’ve needed to but not all my team know yet - not because I’m scared I just haven’t been in a situation to tell them. I don’t want to just blurt it out for no reason. 

However I feel really comfortable around them as they’ve made me so welcome and it’s a place of work where there’s no judgement. There’s a group called visABLE which is there for anyone that has a disability in the work place. I thought it would be good group to join as I thought it might help people sharing my story. 

Im looking forward to getting involved in the group and 10 years ago when I was first diagnosed I would have never put myself out there like that but as I’ve got older I’ve realised the more I put myself out there, the more I can help others too.

My second GNR

Last weekend I took part in my second Great North Run. I decided when I signed up not to run for charity as I thought the pressure to give this year would be more than normal after Covid and I wanted to do it for myself; I had done a lot of running in lockdown so wanted to beat my time from four years ago as I was a lot fitter and was getting better at running.

However last years race was postponed so this year I was not prepared, me and my boyfriend have just refurbished our new house, I’ve had a busy summer plus the fact I haven’t been too well the last six months, so I wasn’t in a position to run a fast time like I thought the year before. 

As you all know from reading this blog, my MS treatment had an effect on my thyroid and I have an overactive one which has really has an effect recently.

 I’ve lost 1 and a half stone, been constantly tired and had some visible effects from it. It is a side effect I have to live with which is better than waking up with MS symptoms, but it really took it out of me. Some days I couldn’t be bothered to even interact with people, and I would fall asleep as soon as I was lying down, which normally isn’t the case since I’m quite a hyper, sociable person.  

It was also making me not want to run as I was scared, I wasn’t going to run far, my motivation was from 100 to zero.

So I was starting to get anxious about the run as I’m quite a competitive person and I knew I wasn’t going to do as well as I thought I would so on Thursday (four days before the event) I decided to set up a Just Giving page to raise money for the MS Trust and I am so glad I did! 

I’ve doubled my target already and I really felt like I had a purpose running. Just want to say thank you to everyone has supported me.

I also knocked 2 minutes off my last time, so I did better than I thought. But I am determined to knock more time off so it won’t be my last GNR.

Thank you to everyone who donated and if you want to just go on my Just Giving page x

 

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.

Having a thyroid problem is a real problem

 I thought MS was annoying enough until I got told I had an over active thyroid. The thyroid is always thrown around whenever someone is feeling tired and run down but I never realised how serious and horrible it is until I started suffering from it. 

At first I was losing loads of weight and thinking this is good, I needed to lose a couple of pounds (something most girls would say). But then I realised I was finding it hard to concentrate on the simplest task, getting extremely tired, struggling to exercise without getting horrible pains in my chest and feeling very down and anxious (so much so, I had a bit of a breakdown at work). To be completely honest it’s physically, mentally and emotionally drained me and I wouldn’t wish it on anyone.  

The reason I have a thyroid condition is due to my MS treatment. It’s one of the main side effects of it. I had my last treatment over a year ago but only just recently had the thyroid problem so at first I thought I’d avoided it. 

My nurse has made sure I’m on the right dose of medication and I’m hoping that it will soon settle down and I’m on the mend... starting to think I’m that problem child you had in your class at school haha! 

I think if you do have anything wrong with your thyroid it’s really important to get on the right dosage of medication asap so you can continue living your normal life. 

The lockdown continues...

What a crazy time! We’re all in limbo and not knowing what’s going on.

I’m furloughed (you know that word no one had ever heard until 2020) and I can’t say I’m hating it. I’m getting time to do loads of different things which I wouldn’t do on a normal holiday from work or a weekend.

So, us lot with MS are vulnerable to this as our immune systems are weak. We have to be super careful, I didn’t actually get a letter from the government say I was on the vulnerable list (which I was quite glad about) but I know I’m not as strong as some people so I am anyway. The only time I’m leaving the house is for exercise once a day, that’s either a walk or run.

Not working is strange… I’ve read books, attempted to learn Spanish, exercised a lot (my Apple watch doesn’t know what has hit it), tidied up a lot (my bathroom has never been so clean), done a lot of quizzes with family and friends, cooked, baked and done some online courses.

Here’s somethings that have helped me through the last few weeks:

·      I’ve set an alarm every morning (trying to make it easier for when I do return to work)

·      Put a bra on every day (girls that one is just for you)

·      Do what you want to do, we’re probably not going to get this time back so if you want to binge watch a TV programme do it – don’t feel guilty about it!

·      Make a to do list everyday – I don’t mean make one so you have to succeed at them all and some of my to do lists have had watch tv on, but it just gives you a bit of structure

·      Talk to people, let out your anger – some days are bloody stressful

Things I’ve learnt from lockdown:

·      No matter how many miles you run, if you eat chocolate every night you don’t lose weight

·      If you add garlic to any dish, it normally is nice

·      You don’t need to have takeaways; you can cook everything possible in the house

·      Some people are just idiots

·      I’ve never visited the Colliery Woods so much (it’s only across the road but before this I’d never been in)

·      Doing a quiz before bed makes me not sleep

·      Work is not life, it’s somewhere you go to make money

While this is all going, I also got a call to tell me my thyroid was overactive (I think I told you all in my last blog)… excellent!

It made sense though, when she explained some of the symptoms, I had some… except the one where you lose weight – god damnit!

The itching, bad skin were the main symptoms I was experiencing and although I didn’t feel fatigued, when I was running my body was but the doctor told me that it was because my body felt like it had already ran a marathon so me trying to run was as if I was running another one!

Although the NHS at this time are under a lot of stress, they got me on tablets straight away and I’m sure they were an illegal drug because now I feel great.

Stay safe guys!

Having MS in the current pandemic

Okay first I need to start by saying what the hell has happened to the world?! 

We’re all currently experiencing something we’ve never known before, so nobody really knows what to do and how to act but we’ve all got to stay positive

MS is one of the illnesses that is on the vulnerable list, so I’ve been advised to be extra careful and if possible, avoid people and stay at home. If people like myself with MS get it, it’ll more than likely affect us more than the average person.

I’m not the type of person that just stays at home a lot so when I was told I had to, I felt like I needed to make a list of how I could entertain myself. I’m working from home for the foreseeable future so that means I have made a home office on my dining room table (whether my dad likes it or not). 

Working from home is weird- I was told before I started that I should make myself a routine otherwise I wouldn’t be able to concentrate. So I did… 

I've started going for a morning run before I turn my laptop on to start working for the day then at lunch time I exercise then have my lunch before getting back to work for the afternoon. 

It’s a pretty simple routine but I felt like if I didn’t get out the house, then I would go crazy. 

Working from home is a pretty new experience for most of us. What I’ve learnt from working from home: 

Lighting is always bad on a video call
I must talk a lot during the day as I got so much work done
Niall Horan’s new album is really good
I don’t snack as much when I’m sitting in the house
Fresh air is amazing 

When you have MS, you have a weak immune system, so you catch everything hence why we are in the vulnerable list at the minute. I probably get a cold every two weeks, to be honest I’ve forgot what it’s like not to have a cold.

Every month I go to the hospital to get my bloods taken to make sure my treatment is working, and my blood cells are normal. 

Last Monday, it was my monthly appointment, if the results are normal, I don’t normally hear anything, I just get a letter through to my next appointment. On Wednesday my nurse rang me to tell me that the bloods that were taking earlier in the week have come back and I have a low thyroid. I wasn’t too panicked, but I did think okay this is when I do need to be extra careful with the coronavirus going around (sometimes I think I’m invincible). My nurse explained that the symptoms I could get was very similar to the coronavirus so don’t panic if I do get a cough. 

Typical of me to have something that has the same symptoms as the most talked about virus in the world!! 

Anyway, I have an appointment this Monday to sort it out so if you hear me cough, don’t worry I probably don’t have coronavirus just a dodgy thyroid!

It’s a difficult time for us all but all we can do is not panic and be positive. Staying in is the new going out for the next couple of months but it’s our chance to spend time with our loved ones, watch rubbish TV, play board games and create new memories. 

Stay safe and look after eachother guys xoxo