A Day in My MS Life

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.The little thingsEither 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.Now, nobody gets angry!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.Keeping my body flexibleOn 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.My favorite time of the dayWe 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.What fatigue is doing to meAt 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!Not what I would have expectedLife 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!