With this entry I plan on going into my strategy for dealing with SPMS. I have been looking into and reading up on how all of this goes. As it turns out it’s much like RRMS except you don’t have periods where you are able to rehab back to prior flare up status.
I am not near the person I was before February 2017. My decline is apparent to those that see me on the regular. I’m still the gangsta beotch I’ve always been, just slower….a lot slower. I do admit I didn’t think i’d get to this point. Not looking for a pity party just stating the facts.
This is what I pulled from The Multiple Sclerosis Trust:
Many people who are initially diagnosed with relapsing remitting MS find that, over time, their MS changes so that there are fewer or no relapses but disability is increasing. This is called secondary progressive MS (often abbreviated to SPMS). It is called ‘secondary’ because the progressive phase happens second, after the relapsing remitting stage. ‘Progressive’ is the word used to describe the change towards more disability.
People with secondary progressive MS may have an occasional relapse but, generally speaking, relapses don’t happen in SPMS. Although disability increases in secondary progressive MS, the rate at which this happens varies from one person to another and there may be times of improvement and times when symptoms stay the same.
What are the symptoms?
There is a wide range of possible symptoms but most people only experience a small number around the time of diagnosis and don’t go on to experience them all.
People with secondary progressive MS may have difficulties with short-term memory, concentration, finding the right word and thinking things through. These are collectively known as cognitive symptoms.
Fatigue is very common. This is not normal tiredness but an exhaustion which is out of all proportion to the task that has been undertaken. Fatigue can be mental tiredness or physical tiredness.
There are other symptoms which people with secondary progressive MS may experience. As with all types of MS, the symptoms vary a lot from one person to another and not everyone will have all of them. Which symptoms are experienced depends on where the lesions are located in the brain and spinal cord.
Not all symptoms are obvious to other people. For example, problems with fatigue or cognitive symptoms can have a big impact on the person who is experiencing them but they may be invisible to others.
It will take time to learn about your MS, how to manage it well and to become your own expert. You may find that a task that is easy one day may be surprisingly difficult on another if your symptoms have kicked in. Try to accept that this is typical of life with MS and that you are not to blame.
Will I become disabled?
You will have your own way of thinking about disability and it will be up to you how you define yourself. MS may affect what you can do but only you can decide if this is disabling. As the symptoms of MS vary, you may have different views of yourself at different times.
Living with secondary progressive MS means living with uncertainty.
Symptoms may be up and down and you may be concerned about how well you will be on a particular day.
The bottom line
Nobody knows what life has in store for them. Try not to worry too much about what might happen or assume that MS will have an effect on some particular aspect of your life. This time and energy could be spent in a more positive way on something that is important to you right now
So with all of that I will admit I am a bit unnerved at the change in my status, but am more determined than ever to fight like hell. After all we are all different and Dr’s aren’t Gods.
I admit I am worried what the future holds. I’ve thought a lot recently about if God forbid something happens to my sweetie? He is a tremendous support for me, as are my kids. I am worried about becoming a burden on them. I am the one that does for everyone. I don’t want them to have to tend me. I am if anything a prideful woman who doesn’t want to be considered a job vs a wife and mother. So this is a real concern for me.
My son Jake asked me to lunch today and I declined. It’s raining and I don’t like going out in bad weather. But I also declined because I felt it was an invite out of obligation. It’s his day off and really didn’t want to spoil it with having to drag me out to lunch. So I told him I was going to work out and I did. Woo mother effin hoo.
I’ll be starting Gilenya when they get all the test etc in place. My dr. figured it wouldn’t hurt anything and might stave off some progression. He said if anything he was looking at quality of life for me. I’ve heard that term a lot since the February before last and quite frankly I think they need to come up with another term. It’s a little bit of a downer to say the least.
So my strategy is going to be to continue to be the asshole I have always been and possibly stepping it up when need be. Don’t tell Lance and the kids it’s a surprise. lol Gotta keep everyone on their toes by golly. I’m going to do my level best to exercise every day and enjoy the shit out of the good times.
I felt the need to admit I do have concerns and worries that are legit, but there are people with a lot more issues than mine so I am still grateful.