The other day I shared my story of how MS came into my life 22 years ago. This time I would like to share a typical day in my life with advanced SPMS. Not to scare people, but to try and show that despite the hardships, life is still worth living. I realize that most of those reading this will (thankfully) never be as disabled as me. But MS is indiscriminate, and some are affected more than others. I probably drew the short straw, but I have learnt to live with it, and I’m still learning every day.
I sleep in a medical bed in the same room as my wife, which allows her to easily assist me with turning during the night, which is required every three hours or so to prevent bed sores and to relieve me from pain after lying in the same position for too long. Good thing that my wife is a very light sleeper anyway…
On weekdays the morning routine starts at six, although most mornings I have already been awake for an hour or two at that point, mainly because of painful muscle spasms in my legs. My wife first washes me down in bed and then empties my urine and ileostomy bag. Until last year, every other day she had to help me empty my bowels, which was a time-consuming and painful process. But the ileostomy has thankfully made things a lot easier.
Then she proceeds to dress me. Depending on the level of spasticity, this can take a while and can sometimes be quite comical.
Then comes the transfer to my powerchair, with help of a ceiling lift.
I used to jump out of bed and into the shower and be ready to go to work within literally a few minutes. So the whole process of getting ready for the day has certainly slowed down a lot. But that may not necessarily be a bad thing, as it gives us more valuable time together. In the past we would often hardly see each other or have time to exchange a few words in the morning. There is always a silver lining, if you care to look for it.
Once I’m installed in my chair and ready to face the day, and my wife has readied herself for work, we share breakfast. On good days I can eat without assistance. My left hand no longer works, but I can still use my right, unless it’s too weak, too shaky or it claws up, which can happen on any given day. At those times I need help, which I refused at first. I would tell my wife that I’m not a baby that needs feeding. However, after too many involuntary attempts at redecorating the dining room, I swallowed my pride and came to accept help and now think nothing of it. It’s just part of life.
Either way it takes time. Gone are the days when I would gulp down my food in a hurry to get out of the house for work! With MS also come swallowing problems, and I therefore need to chew very carefully in order not to choke on my food. I have to do things much more consciously, which may not be a bad thing.
My wife leaves the house for work between 8:00 and 8:30, depending on the progress we made earlier with the whole morning routine. Thankfully her employer is flexible enough to allow her to come in later when needed. I’m grateful for those ‘little things’ that make our life easier.
I then spend about three hours on my own with the cat, mostly at the computer, either chatting or just surfing the Net. Or I watch some TV. If I had a rough night or am otherwise too exhausted, I recline in my chair and nap. I can no longer sit upright in my wheelchair for an entire day. I don’t have the necessary upper body strength anymore, and my head tends to feel too heavy to keep it upright. In my working days I often wished I could have a nap during the day. Now I can, and nobody gets angry at me for doing so!
Near lunchtime a carer comes to the house to empty my urine and ileostomy bag and help me eating my lunch, if necessary. It also gives me someone to chat to, which is nice.
Then I’m alone again for about three hours, before another carer comes to again empty the bags, or on some days, to change them.
On three days a week a therapist comes to the house in the afternoons to stretch my limbs and do some passive exercises with me. That’s meant to prevent my limbs from contracting and to keep my body flexible. I also find that it generally helps somewhat with spasticity, together with the meds I’m taking. In-between I again spend time at the computer or watch some TV, before my wife comes home between 5pm and 6pm.
We then have dinner together. This is my favorite time of the day. We can talk about the events of the day and listen to some nice music in the background. We used to have a glass of wine with dinner, and my wife still does occasionally, but it’s no longer an option for me, as it interferes with my emptying of the bladder and impacts my thinking and my speech, which is slurred even at the best of times. I miss a glass of wine with the meal.
Very rarely I succumb to the urge and have half a glass, but usually regret it soon afterwards. It’s just one of those things that I’ve had to learn to live without. It doesn’t bother me too much that I can no longer walk or that I need help with most tasks. But it’s the seemingly insignificant things like the occasional glass of wine or a proper bath that I find frustrating.
At the end of the day I’m usually wiped out. One might think it odd that someone can feel exhausted after a day of “just sitting in the wheelchair” and doing nothing, but that’s what fatigue is doing to me. I’m sure that many with MS can relate. It’s another of those things that I find so frustrating, as there is nothing to combat it.
So after emptying my bags, my wife gets me ready for bed around 9:30pm, where I usually watch TV until I fall asleep.
Weekends are much more relaxed, and my wife takes care of all my needs, without the need for external carers. She’s an angel. She does all that without moaning, with humor and a smile on her face. She’s remarkable!
Life is not easy, but it could always be worse. It’s certainly not what I would have chosen, and It’s not what I would have expected my life to be like at the age of 49. But the human mind is capable of adapting. I may hate my MS and what it has done to me (and believe me, I have plenty of crappy days), but I’m still happy to be alive and to be able to share it with my wife!