For some reason this has been the hardest post to write so far, I don’t really plan what I’m going to say until I start writing…I’ve re-read it 10 times and whilst it is probably my most personal yet, if it can make one person who may have the same thoughts think twice about how to deal with it, then it will be worth it. Jeez this blogging is emotional work!! Also I’m sat waiting to go into see my MS nurse so people are looking at me a bit weird, you’ll understand why as you read on….is it too early for a G&T?
Coming home after hospital was quite a weird feeling. I went back to stay with my mum and dad who were amazing and think that’s when the reality of my diagnosis started to hit home. It had been a bit of a crazy few months, but whilst I was “in it” I don’t think I really stopped and thought “about it”, if that makes any sense at all. I was still high as a kite on drugs, but had one eye that was working, so I just started reading and reading and reading. Every article, journal, website, newspaper article I could. I have to really understand something to accept it, and felt like I needed to become my own expert on my MS. The lovely steroids also meant I never ever slept, I’d be googling away at 4am still, wishing I could fall asleep. Maybe it was the drugs, maybe it was just that I had a lot on my mind, either way I felt like a zombie.
Its hard to imagine how you would feel if you’re diagnosed with an illness that can’t be “fixed”. That’s what I struggled with the most at first…I’m a tenacious pain in the ass you see so I always believe there is a way, I think anything is possible, so this illness did not sit right with me. How can there not be a cure? We’ve landed on the moon, yet we don’t know enough about a disease that affects over 100,000 people in the UK alone? Damn, nobody could even tell me how I got it? How does that figure! You quickly realise with MS that there are a lot of “we don’t knows”. It still drives me insane!!!
Trying to get my life back on track them first few weeks after coming out of hospital was difficult, physically I was making progress, but I think emotionally I was being dealt new blows daily. I’m not afraid to admit now, that I was scared. Really really scared. My own immune system had turned against me and I didn’t know if tomorrow I’d wake up and not be able to walk, or see, or speak. I am a positive person, I try to be strong, but this uncertainty that had all of a sudden been forced into my life, gave me a major wobble. I had a few mini meltdowns behind closed doors, literally terrified because my whole plan on life had been scuppered. Or so I thought at the time.
One memory sticks out the most. I went to a hospital appointment and a young nurse after learning I had MS, started telling me about her friend, who was also my age, who had recently been diagnosed with MS, she went onto tell me that her friend had two young children, how glad she was that she had had them before her diagnosis and she had immediately given up work as she wanted to use all the energy she had to play and bring up her kids before the disease took hold. She covered all the negatives! There was a lot more to it, but you get the jist.
I was lying there about to have a scan and the words from this nurse hit me like a sledge hammer, I’m 32 and I don’t even have any kids yet, does that mean I’m going to be a crap mum if I ever do? Will I even be able to be a mum? Am I ever going to meet anyone that doesn’t see me as “damaged goods?” I lay there smiling and nodding and listening to this nurse go on and on and I suddenly felt like someone was sitting on my chest and I couldn’t breathe. I’m sat here writing this now and I have tears running down my face (hence why people are looking at me weird) because I will never forget the feeling and fear that hit me. I came out of the hospital that night and cried like a baby for a good solid hour, the brave and smiley face I’d been putting on slipped for a little bit.
I woke up the next day and decided that I had to sort my head out, “I am not going to let fear takeover, Jesus Christ Rachel, nobody in this world knows what could happen tomorrow, you aren’t any different”.
So, I let it go.
What’s that saying about carrying hot coals around, I had to practice what I preached.
Don’t get me wrong, sometimes I can have a little moment of panic, but I realised that MS was not a life sentence for me. I would never let it be. It didn’t mean I couldn’t have a family. And the right person wouldn’t see me as “damaged goods” (hopefully). Ultimately, I promised myself I would never ever ever let MS define me.
Just to help you understand how much I was determined to not let fear stand in my way, that day I got in a taxi, eye patch and crutches in tow and went and bought a brand new house. I looked like I’d escaped from a mental asylum, couldn’t even walk up a set of stairs or see my bloody hand properly in front of me, but I got a great deal. Every cloud and that silver lining eh.
Also to point out here, no one knows how your MS will progress, the treatments nowadays are so advanced and I believe combined with having the right attitude means many MS’ers live a ‘normal’ life, just using a bit of creative thinking to achieve it!
I had to go through this rollercoaster of emotions to sort of get where I am at the minute. I try to no longer worry about what will happen tomorrow, and just try and focus on today. If anything, this experience has really made me appreciate everything I do have, and how lucky I am. I am surrounded by amazing people, a career that I love and have a pretty nice life. My perception on a lot of things has changed for the better, I try not to get stressed about the silly stuff (because if I do my body suddenly goes into rebel mode again) and I try and live a drama free life. Don’t get me wrong, I still have the occasional wobble, doesn’t everyone, but I just try and do good in the hope that’s what I will get back from my life and the people in it, in return.
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