When I went into hospital, I was care free and complacent about my health, I would be working 14 hour+ days some weeks, then socialising in the night, squeezing in some sleep and starting it all again the next week. My life was fun, happy and exciting, to me. From what started as a sore back and developed into an MS diagnosis, meant that I was thrown into a world I didn’t even know existed. My main aim was to get home and start getting back to normality. I literally couldn’t face another night on a ward, not knowing if I was going to be woken up by someone trying to climb in bed with me (true story) or by the constant checks and pokes and prods the lovely nurses have to do to make sure you’re still alive! Once I knew what was wrong with me, my next questions was, “Can I go home now?”…I had asked this question every day for 2 months and by this point I had a pretty good relationship with my lovely neuro doctors, but I think they wanted to get rid of me too! When I finally got a “yes we will aim for next week”, I felt like I had won the lottery. I got on the phone, rang my hairdresser, booked a facial, started looking forward to going back to work (true story again) and started thinking of what lovely things I wanted to do in the outside world, that had become just a distant memory.
Then over the next few days reality hit home.
I wasn’t leaving the hospital as the same person as when I come in. I was still me. I just couldn’t see properly or walk and I was pretty unwell, and tired, oh I was soooooo tired. I was so angry that I couldn’t just throw my trainers on and escape. I couldn’t drive, I couldn’t walk anywhere, damn I couldn’t even operate heavy machinery if the opportunity arose! I was allocated a “Rehabilitation” team to try and get me well enough to make the transition home. They spoke to me about special equipment I may need and how I would need to adapt my life…I felt like they were talking Chinese. I was listening to them, but all I was thinking was “there is not a chance in hell that I’m going to need a bloody seat in the bath… NOT A CHANCE”. I just couldn’t resonate with being a sick person, I genuinely thought I was wasting their time and they would be better off helping someone else. It was quite a scary time getting ready to go home, I had been protected from the extent of my health changes by being in the hospital and now I was having to go and see how I could handle life again. I looked like death warmed up, I had to wear a patch over my eye that had suffered the most damage and swelling during the relapse, and every time I moved my eyeball it sent shooting pains through my head down my neck, I was shaky on the crutches, and with the vertigo kept losing my balance and falling over. Bearing in mind I had had major spinal surgery the month before , which had sort of got forgotten about, so all in all I was a “sort of” walking, talking looking car crash. I had also been on infusion steroids and had another 12 weeks of steroids to go, so my face was swelling daily and resembling the moon by the hour. So, yeah I wasn’t feeling my best to say the least.
“We just need to do one more Spinal MRI before you go home” was what I was told on the doctors rounds the next morning.
No probs I thought, this will be my 7th maybe 8yh MRI, surely they can’t find anything else.
Waiting the rest of the week for the results, a lady came to visit me “Hi, I’m from the brain injury department”… to which I explained to her I didn’t have a brain injury and I didn’t need to speak to her, she must have the wrong bed! She then very delicately (I think in case I threw my crutch at her) explained that she was here to speak to me, as I had suffered a brain injury. “WHOAHHHHHH no one described it like that”. Suffice to say the poor women probably wished she had took an early dinner, because I asked her every question under the Sun and started googling pics of brains, asking her to show me why mine was injured! She was lovely though, I just wasn’t really ready to have another label of “brain injury patient” added to my ever growing list.
The next day was Friday and I had planned that I was going home, no matter what. I still hadn’t received the results of my latest spinal MRI and when I asked the doctor, he looked a bit worried and told me he needed to come back later on and speak to me. ERM OK. So then began a 6 hour wait of thinking I was dying again and my chance of going home and eating sui mais and Nutella butties had gone to pot.
I sort of knew by now when my doctors had bad news, they wouldn’t really look me in the eye, and the top neurosurgeon was an amazing woman, who that afternoon, walked up to my bed, put her hands on my face and kissed my head. “YUP IM DYING, ITS OFFICIAL…I’M A GONNER!!!”
“We have found more shadows on your spinal cord”
“Jesus Christ mother of Joseph, give me a break – Are you messing?”
Please note: I asked this question a lot to the doctors and from my thorough research I found when giving you life changing serious news about your medical state, doctors NEVER mess. Never. Such a shame.
You see, MS doesn’t just cause havoc in your brain, it also can attack your spinal cord and mine was showing very early signs. This meant that the nervous system it attacked here would have effects on other parts of my body. What and where I didn’t really know.
I was sort of used to getting bad news now, I knew whatever happened I would make sure I was ok, and so I listened to the doctors and then told them I was going home that afternoon. I don’t think they risked even disagreeing with me, they knew they would be dealing with a mental health patient I think, if I stayed in any longer, so 2 hours later my lovely dad and sister came with a 10ton trailer to take me and my 9 bags, 2 pairs of crutches, dodgy wheelchair, 230 cards, 6 boxes of presents, a cuddly toy and treasure trove of medicines home!
Can we please appreciate the fact there was not a Bath seat in sight.
Rachel 1 – 0 MS
Thanks for reading x