No matter when you were diagnosed with multiple sclerosis or any other chronic illness, there are times you’re confronted with your own self just that little bit too much. And what you see, is not what you signed up for.
Leaving the standard first impulse “Why me?” question and the “It’s not fair, either!” shouting aside, you suddenly can’t recall answers on things you were so sure of before MS entered your life.
“Will I be able to go on holidays in a few months?”
“How will I find my way to yet another bland treatment room in yet another hospital department?”
“Will I be able to keep my job, my relationship afloat or stay in control of my life?”
If or when your symptoms subside, you feel relief, hope. When MS turns around and suddenly thumps you on the nose with a new symptom, emotional pain might be twice as hard. You went through it once before already, remember, so why having to go through it again? ‘Unfair’ is a word that will show its bloodied nose every so often.
For people who know Elisabeth Kubler-Ross’s ‘Five Stages of Grief,’ being diagnosed with a neurodegenerative, chronic illness may feel like you just lost a dear family member or friend. The grief feels similar, after all, the old you is gone, and in its place is a person with a new, damaged central nervous system.
After losing five family members in the space of three years, being diagnosed and while studying Counselling, I found KBR’s theories very recognizable. Not only did I go through some of the stages of grief after each family member passed away, I found the template also matched the emotions I went through after being diagnosed (the five stages of grief, also called DABDA, are denial, anger, bargaining, depression and acceptance. For more, click here).
Each of us deals with grief in a different way. With my MS grieving period now over, every so often I need to be reminded of what’s wrong inside my brain. I have a habit of just not knowing when to pull the handbrake on myself and stop doing what I’m doing, which is reading or writing (Bibliophiles and fellow scripturients will know exactly what I mean).
Remembering what a lesion on a brain looks like is not what I look for. Usually, and on a good day, it only takes reminding myself of the days before my diagnosis. I think of the physical pains, but not of the mental distress of the diagnosis itself.
Having learned positive language through years of heartbreak, loss and hurt, knowing which words to use when is sometimes a quarter of the battle fought already. “What is wrong with my brain” does not mean, “What is wrong with me” and using this phrasing doesn’t make it seem half as serious as it really is. There is a definite difference between both terms. Call it female-with-MS-having-to-compartmentalise-language.
I am in no way demeaning people who have a harder time placing their illness in their life because I have been in that exact same spot of wondering “what the hell?!” What I’m trying to convey is that one day MS, or you, will let go of the stronghold it has on your life.
To get there, having a good management plan is a definite must. It’s not a strict having-to-do-this-before-that-plan because MS is fickle. MS will help you remember that sometimes, that management plan will be all mangled up and you will feel like taking part 3 before part 1, or part two before part 1.
Looking back now, I see three or four distinct parts: looking after your emotions, how to handle daily life, trying to manage MS itself and lastly, trying to manage others. The last one is often the hardest part, as you never know how people will deal with you, so I tend to just be me, my own hero for looking after myself the best way I can.
My action plan?
Handle your emotions: No matter what you do to me, MS, I still win! Focus on what you CAN do, and not what you CAN’T anymore. If you find it hard talking with people, why not start a journal or a diary? You don’t need to share it with anyone, and writing as therapy is something that is very, very helpful. I can only recommend it.
Handle your symptoms: I got five different injection-treatment plans I can follow, perhaps the intravenous one, or oral treatment plans. On top of that, there’s good food, good fun, lots of rest or relaxation and filled pill boxes I can add to that!
Handle daily life: Have a time-management plan. You often have to shout “Time out!” when you can’t keep up with others, or yourself, and I do it more than I’d like to admit. To counter this, I built in forced afternoon and early evening breaks to make sure I can add at least a few extra hours of television/reading/writing to my day.
For example, at 1 pm, I watch the Irish lunchtime news, followed by an episode of Home & Away or a National Geographic program. At 6 pm, I again watch the Irish news, followed by my secret indulgence, EastEnders.
That doesn’t mean that I am running around like a maniac in between these breaks though. Na-ah, no can do. I write (here I go again) or I read (yep, I just can’t help myself). I do a few bits and pieces around the house; all play and no work would only lead to a messy house otherwise, and I require Dettol disinfection warfare as soon as I move my feet (A hospital-acquired superbug enforced me to do so).
I’ve also learned to do my dishes “the MS-way” by soaking them first for about 15min or so. It takes less energy scrubbing them and it leaves time for the hot water to cool down (That hospital-acquired superbug also enforced this upon me). In all, you can go around cleaning and maintain your house in segments without having huge drops in energy.
Other things I classify under time-management is doing grocery shopping in the morning, or having doctor or dentist appointments before noon. This way, I make sure I don’t have to get up and go when all my energy is gone by the afternoon. Feeling absolutely drained by lunchtime is a very prominent thing in my daily life, so I work around the things that need to be done first of all.
Even with forced rest breaks and scheduling tasks around my MS, I still have a way of falling asleep in the most unusual poses and ways. If I were to introduce you to my mum, she could keep you up all night with my falling asleep antics. Of course, she’d still be talking to you, while I ungracefully slump over, drop books or remote controls on the floor and start my snooze-fest (I keep the same sleep-diary as fit three-year-olds!)
Also, I’ve developed a way of falling asleep within the first 3 to 5 minutes, sleeping through very loud fireworks in the area, aeroplanes flying over or my own house alarm system blaring in the house. Or like my nana used to say, “When you do something, you have to do it properly,” so when I sleep, I’m actually half-dead. Kinda like “When I’m good, I’m really good, but when I’m bad, I’m even better,”
No matter how you manage your illness, don’t go to bed on negative thoughts. Leave fights at your bedroom door, or at least solve them before you go to sleep. Try to find some way to get rid of negative feelings in a different way. Talk to a friend or family member about something different from your illness, laugh and joke or watch something upbeat. Your body and mind will thank you for it in the morning. Take some time off from your MS, it’ll be there long enough.
Do I have bad days? Of course, I do, for I am not infallible. It’s simply all about falling seven times, but getting up eight.
©Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2014. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.