MY M.S DIAGNOSIS AND GRIEF
No one has died so why am I grieving? I’ve been asking myself the same question for the last 6 months.
In October of last year my body decided to give up on me for no reason. I was standing in a pop up shop that I was working in for Halloween trying to serve a customer when the left side of my body went completely numb. The next I knew my hand had shot up to what I can only describe as a claw shape. There I would stand paralysed completely in the left side of my body for 3-4 minutes. I honestly felt like I was having a stroke. I’d lost control over the left side of my body, my speech was slurred and I felt that for anyone looking at me, they would probably think I was drunk. Long story short this was possibly one of the scariest things I have ever experienced. At the time, I had no idea what was going on and these episodes only became more frequent and increasingly severe over the next week. I couldn’t grip my knife and fork or hold my bag and would have no warning of when these attacks would happen.
I ended up in Beaumont hospital and a neurologist came to see me. Not to say; I felt like the biggest idiot in the world. He asked “what has been happening to you?”. I told him what I had been experiencing for a few days prior to arriving at the hospital. I spoke about these ‘weird attacks’ that were happening to me which would leave me unable to control my left arm and leg. After the usual examinations and questions, he told me that they were called ‘tonic spasms’ and that they generally only happen if there’s an underlining disease. I was under doctors’ orders not to google what tonic spasms were and what they were associated with. SO naturally, as soon as he left, I was straight on google doing exactly what I had been told not to do. What I discovered had induced fear. Great! I thought… I either have cerebral palsy, Lyme Disease or Multiple Sclerosis!
My gut was telling me that it was M.S. but the not knowing for sure made things more difficult and my mind would wander. After an MRI and EEG it became very clear that it was indeed Multiple Sclerosis. My neurologist came in and told me that I had an inflammation on my brain. So automatically the hypochondriac in me thought; “That’s it, I’ve a brain tumor or CANCER!”. She told me they found lesions on my brain and spinal cord and that they were 99% sure it was M.S. although this was not the official diagnosis. She asked me if I ever heard of it and how I felt about that. Honestly, I was so positive of hearing this news and I told her how I been praying for it to be M.S because I didn’t want it to be anything worse like cancer and the likes. The next step in my diagnosis was having a lumbar puncture to test my spinal fluid, they could get a clearer picture. This would also provide the information they needed to support their suspected diagnosis.
I got home from hospital after 8 days and it wasn’t until December that I was officially diagnosed as having Multiple Sclerosis. Surprisingly (even to myself), I was still so positive after hearing the words “you have MS”, possibly due to the fear of the unknown I’d gone through for the weeks before hearing the news. People kept asking me how I was coping and I was fine, I was so positive and sure there’s so many worse things going on in the world. “Sure I’m grand, not a bother!” I would say, almost brushing off peoples concern and belittling the diagnosis. The thing was, I really was positive at the time and thought “sure you can live a long life with MS and nothing will ever stop me from being me!”. Little did I know that my positivity would change over the next few months and that I would actually begin to grieve.
Grieve? Yes Grieve. “No one had died so what is wrong with me?” I’d be asking myself. I was overwhelmed with the mix of emotions I was going through. Happiness, sadness, anger, agitation and irritation to name a few, but I couldn’t understand why.
At first I felt sad. My body wasn’t able for too much and I was out of work. I felt exhausted all the time. It’s like having a constant hangover only you haven’t been out drinking the night before! When I was younger, I always thought I’d be doing great things with my life. I’d only turned 27 and yet my body feels like I’d just turned 80! I was feeling low because even though I collect glasses for a living, they were my glasses to collect and I loved my job.
I’d begun to feel angry at people for no reason and yet if anyone asked me, how I am I’d smile and say “yeah I am fine, not a bother” when really I felt like crap and felt worse because I was now becoming a compulsive liar by always pretending to be fine when I wasn’t. It wrecked my head because I was also beginning to feel paranoid. What people don’t understand about having MS is that even though I look healthy on the outside people can’t see what I go through daily. They can’t see the aches and pains I get or the fatigue I feel. To anyone who doesn’t know of my diagnosis, they probably think I’m fine because I look normal and healthy. I have MS symptoms every day and am sore every day and yet I am still not in remission, but hopefully that will change soon.
I suffer mainly with neck pain, stiff legs, leg and arm pain, pins and needles, balance and fatigue. I still have an underlying fear that my tonic spasms might come back because I have no control over them, even with medication. I find that I need to rest if I walk too much or maybe need my partner or someone to link me when I’m having a wobbly day. Sometimes I get embarrassed, they say heat can aggravate symptoms, but I have found that extreme temperatures whether hot and cold, aggravate mine. Even having a shower, on a bad day, I might need help to dry and dress myself. Sometimes you can feel like no one understands but people also are very good and try to understand. I am lucky because my loved ones have been very supportive.
Although, support can often be frustrating at times too. People are fantastic at offering advice about healthy living and changing your lifestyle but when your body physically does not allow you to walk for extended periods, let alone attempt to run or join a gym, it can be infuriating to listen to this so-called “advice”. Often when I hear such suggestions, my inner voice replies in sarcastic tones “yeah, that’s a great idea, I can’t walk without it being difficult so I’m sure running will do wonders for me, maybe even cure me!”. And here is the anger stage of my grief. Anger at my body, at other people, frustration that people don’t understand even though I know they are trying their best.
Denial is probably one of the hardest stages I have gone through and at times this emotion sneaks back in to instil more doubt in my mind. Constant thoughts of “what if it isn’t actually MS? What if they got it wrong?”. I continue to double-check my symptoms using trusty google to see what else it could be. I’ve wrecked my partners head and my younger sisters head over it by going through the list of things that it could be. What’s frustrating here is that I wanted it to be MS because I didn’t want it to be anything worse. Yet on occasion doubt creeps in again and I begin to fear the worst all over again. The denial stage is difficult because I feel like I am accepting MS as part of me yet due to my nervous and worrying nature, the fear of it being something much worse still remains.
My mood would change so quickly from happiness to anger and then to guilt. I’d find myself bargaining with God, praying for answers or praying that it is nothing worse. Realisation hit that these types of feelings seemed familiar. Then I remembered I’ve felt this way before. I’ve felt all these emotions and erratic changes in mood when I’ve experienced the loss of a loved one. I realised I was grieving. I have been feeling similar emotions one would go through when they lose someone they loved. The thing is, this has helped me digest and process my diagnosis. I am still the same person. My body might be attacking itself, I’m basically kicking myself in the arse, but I’m still the same person. Medically speaking, I am not in remission yet, my treatment hasn’t worked for me, I still have active lesions but I am starting new treatment soon which will hopefully work this time.
One good thing from my treatment not working is, after tomorrow I will no longer have to take my injections (which themselves have become sore) and I’ll have a tablet instead. I still have plenty of hospital appointments over the next few weeks but I am once again feeling like myself. I’m gradually getting back to being a positive Christina. There are days that I still go through different grieving emotions but I just wanted to share with people how I learned to accept my diagnosis, the ups and downs and provide an insight into living with MS.