This June I will be found dangling off the Forth Rail Bridge, an iconic bridge which can be found just north of Edinburgh, straddling the Firth of Forth. Unfortunately it often looks like the picture below but I am keeping everything crossed for bright sunshine on 21st June.
Am I scared of heights? Not really but then again, who does want to dangle from a rope over 100m in the air? I do!
So, I don’t think it is a widely known fact about me but nearly 10 years ago I was diagnosed with MS (multiple sclerosis). It was very difficult to come to terms with, I think I mainly just ignored it and got on with my life. Only my very close friends and family knew about the diagnosis and they were all fantastic. To be honest, it has only been over the past 2 or 3 years that I have been more vocal about my MS. It does help when people in the public eye raise awareness, for example when Jack Osbourne was diagnosed and when JK Rowling’s mum sadly passed away. So now I want to raise more awareness too and raise money to help us fight this cruel disease.
I was diagnosed in my first year at university, aged 19, and it was a pretty grim time. The trigger for an MRI scan and investigation was something that I still remember vividly. I was out shopping with my flatmates and I had an itch on my stomach so I scratched. I couldn’t feel it at all though, it was completely numb. This lack of feeling covered half of my torso, from belly button to spine, and spread down one thigh. It was the oddest sensation and I waited for it to disappear but it didn’t. That night, together with my very supportive flatmates, we phoned NHS24 and I was told to go to hospital outpatients at 3am. From here my story quickly began…
Over the years I have been through many highs and lows. I have frequently suffered from numbness, altered sensation to my skin, double vision, shaking eyes (resulting in the inability to walk), to name a few. Perhaps one of the most extreme relapses I encountered was with my legs. I remember trying to walk home from university one day but I basically wasn’t getting anywhere. It felt like I was trying to wade through Golden syrup – I was getting nowhere fast (or at all).
I never know what might happen next and I’m still learning to deal with anything the disease throws at me. I always know things could be a lot worse and I am lucky.
My current situation
My biggest struggle over the past few years has been fatigue. And no, this does not just mean I’m tired. It is like a fog overcomes your brain and your body fills with lead. It is a pretty constant feeling and makes even the smallest tasks pretty difficult. Fortunately I am a very organised person and love to do lists anyway, so these tactics help me out massively. Trying to hold even the most basic of conversations can be a huge struggle.
“The fog makes it impossible to see across my brain for the words I’m looking for.”
Most nights I am in bed by 9pm and falling asleep by 10pm. I get plenty of sleep but this doesn’t influence how I feel in the morning. Every single day I feel horrendously drained and even the smallest tasks, such as washing my hair, can completely wipe me out. I now wash my hair the evening before so I can try and spread out these tasks and conserve some energy.
Don’t get me wrong, I’d say I’m definitely luckier than most. As I said before, I’ve had relapses where it is near impossible to walk or I can’t see. Right now I am okay, I suffer from terrible fatigue which makes day to day life very, very challenging. But I’m okay, I feel lucky and I know it could be a lot worse.
People always talk about these sort of diagnoses making them grab life with both hands. When I was diagnosed I was 19 and lacked confidence. I was living in a new city and trying to be a normal student in my first year of university. Nine years later and right now I am often just too exhausted to embrace this philosophy. However, that is no excuse and I will prove it by dangling off a bridge.
The constant battle – me vs. me
Sometimes I feel like I’m just going to sleep my life away, which makes me feel sad. I am so tired all of the time and that is also what I’m thinking about 90% of the time. It makes me wonder what quality of life this is? But then I remember that I have a great life and I’m surrounded by great people so I just get on with it. And that is what I will continue to do.
The gif below sums my life up. This kitten is me, every hour of every day. But more often than not, I’m not at the point where I’m going to fall asleep, I just have zero energy, zero brain functionality and I’m as weak as that kitten.
Some days I just want to cry and cry because I feel utterly drained and useless. Some days I have a glimmer of hope as I get close to the feeling of not being tired. The latter days are rare but they do give me hope and they fuel my stubborn nature – I will never give up.
So, what am I going to do about it?
Who knows what the future will hold. This disease seems to be the most bespoke illness on the planet – everyone is different. All I can do is adhere to the cliche and take each day as it comes.
So for now I am staying positive, if a little slow and sleepy, and I will take anything the disease throws at me. That is why I decided to do something to raise money for the MS Society. Research is coming on in leaps and bounds. Although I’ve never read any Harry Potter books or seen the films (and have little desire to do so) I am very grateful to JK Rowling. She has ploughed a lot of money into helping with research into the disease and I even have a snazzy new building to visit for my hospital appointments.
This year I was referred to try out some fatigue management sessions in Edinburgh. They were very interesting and I met some lovely people who also suffer from the disease. I have also been trying to have a much more healthy and balanced diet. My new smoothie maker is my best friend.
Next on the cards I am trying acupuncture. To say I am sceptical would be a slight understatement. It may come as a surprise but when I first went to university I started off by studying a degree in Reflexology. After a year I realised this wasn’t my cup of tea and I changed to something far more practical. However, I can’t ignore the fact that there is lots of positive research around acupuncture.
My physio has been working with acupuncture for fatigue for a long time and carried out lots of research so I’m keeping my fingers crossed it helps. So far it’s too early to tell but I’m remaining hopeful.
I couldn’t go battle my way through any of this if it wasn’t for my amazingly supportive family and boyfriend. They are always there for me and they would do anything for me. They are so understanding, even when I don’t understand what’s going on myself!
Despite everything I’m going through I will not let this disease define me and I’m determined not to let it get the better of me. As a result, this June I will be abseiling off the Forth Rail bridge to raise money for MS Society. Yes, I am pretty terrified but also very excited.
I have been completely overwhelmed with the generosity of all of my friends and family. I already know that the 21st June is going to be a very emotional day – I’ll probably have to sleep for a week after!
So far I’ve smashed my target but I’d still love to raise more. If you would like to donate then please visit my page HERE. No matter how small the donation, every penny really will make a difference.
Until then, how hard can this abseil be? Surely it will be a walk in the park compared to the daily battle with MS.
If you’d like to read more about MS, here are some article I’ve found really useful:
- Living with multiple sclerosis: It’s the hidden symptoms of MS which have the most impact
- The People’s Strictly: Trishna’s story
- Love and multiple sclerosis
- Cognitively cloudy days
- Ever feel agitated living with MS?
- MS Pals Facebook Group – a great group of supportive people living with MS