Many times in this blog I have mentioned how important it is to pace yourself. Particularly if you have a chronic illness which comes with fatigue as a symptom. Over the last week I pushed myself too far and I am paying the price now. Let me give you an idea of what happened.
On Monday I had an important phone appointment. It was going to be a long call and so we split it into three half hour pieces with a 30-minute break between each of them. Despite this, my Persistent Post Traumatic Headache soared to an eight on a ten point scale. This meant I was in bed, in a darkened room, for the rest of the day, from about 1 pm.
On Tuesday I had a visit from the Occupational Therapist to see if I needed any more help with my mobility scooter, and we decided I was ok for now, but I can make contact if my situation changes. I am very impressed with this OT, as she looks at the wider situation, not just focused on the scooter. After this visit and due to the pain of Monday I had to take it easy for the balance of the day. I did venture out to the supermarket on my scooter later in the day. It was my first time in that shop since March 2020. It looked the same and I was a little disappointed.
Wednesday, I was doing some work for the university and had to change my password for their system, as a safety precaution. However, once I did this, my new password did not work and I have been locked out of that system since then. This means I cannot do any work there. I tried to take it easy, as I knew I would be travelling on Thursday. In the morning I did some exercises. I did just a little too much, and so my mobility suffered for the rest of the day.
Driving takes a lot out of me. First is the concentration required to drive plus my vehicle is not suited to my disability. It is a saloon car with low seats. This makes my legs cramp and the pain gets worse too. On Thursday I had to drive to Galway and it was a whole day trip. I was able to use my scooter around the town and it was warm and sunny. We even ate some lunch outside, it felt like being in Spain. After that I went to purchase some electronic equipment. The sales person was not helpful, so I went to another shop, where I finally bought the product I was looking for. After the one and a half hour trip home, I went straight to my bed, using the stairlift to get me there.
On Friday I had two meetings, the first was an exploratory meeting about a new project where my patient advocacy knowledge could be useful. It took 30 minutes and was draining. In the afternoon I had a meeting for the university which lasted an hour. Another tiring day. I had no more energy. My battery was flat.
On Saturday I had to go to Galway again, as the electronic equipment I bought was an older model. The salesperson just wanted a quick sale. This trip was hell, as the pain increased much earlier than on Thursday. I just had not recovered enough, so I paid a big price. This followed into Sunday. I took several naps, and went to bed early, again. My mobility yesterday was a disaster, with me using all the aids I have to get me around.
Today I will have to rest again. Over the week I just did too much, I did not pace myself. This meant I lost days from my schedule and more pain and fatigue. It is really easy for me to cross the line into overdoing it. This situation could have caused me to be angry at what I have lost, or even frustrated. But this brings no benefit to me. Nothing.
I have learned to accept the situation and not dwell on the impact of my actions. Learning from this is ok and I will now, again, adapt my routine to compensate. Due to all the activity during the week I did not exercise often enough. Once per week doesn’t work. I need to do little and often, to build strength and fitness. This coming week I will try to do better, but today, I won’t do anything again. I just don’t have the energy.
With an illness, like MS, it is very difficult to know where the boundaries are, as they shift, continually. There are days when I can exercise in the morning, and still be able to walk a bit in the afternoon. Sometimes I can drive to Galway and still function to my ‘normal’ the following day. There are so many elements which need to be monitored so I can function optimally. Due to fatigue and pain, it can be difficult for me to assess my limits.
Will this stop me from doing things? No, that won’t happen. I have learned it is easier to accept I pushed myself too far, try to understand why this happened, and then adapt. As the rules of my life change, I must also change my tactics. There are time when I will make a mistake, making the wrong choice. I console myself by accepting there is no roadmap for my MS. It is different for me, as it is different for every person living with MS.
We just need to stand up again, dust ourselves off, and start again.