Week ending 7 October 2018
What a week!! Full of ups, and downs. But that is the reality of life. If you take part, then things will happen. Some of them good, and others bad. At the end you look back and think;
“How did I survive it?”
On Friday afternoon, and all day Saturday my headache reached a pain level of 8 (on a 10 point scale). It was brutal. The only way I could manage it was to be in a darkened room, with no movements. Everything made it worse, and my mood was bombastic. Trip fused is an understatement, and I had no grasp on what was reasonable, or rational. It was much safer for me to be in a black box, releasing myself when it settled down. On Sunday it was manageable again.
Did I swim this week?
Yes, I did. On Wednesday I dipped in the pool and swam 468m in about 20 minutes. This brought a smile to my face, considering on Tuesday I attended my initial FES (Functional Electrical Stimulation) therapy session. It was one hour, with a benchmark test. Over the 6-minute’s I had to see how far I could walk, run or crawl. I set a steady pace with a glass of water along the way. It was like a marathon, with stations along the way to hydrate and feed me. I achieved a distance of 105 metres. To put this into perspective, a healthy person walking at an average pace could achieve 500 metres, and if they ran, hmm. I didn’t look that up. Too scary.
On Friday I did my second session, and I was using the device to assist my hamstring, and to lift my foot. I walked for 30 minutes and took 790 steps. How far I walked, I don’t know, but it was significant, for me. This comes at a cost, and on Sunday my hamstring was still sore. This amount of work was unusual for it, and all the muscle fibres are still in shock. Maybe if I had a beer after the session it might have helped. Oh, I can’t drink beer, they do not allow it in my new diet, plus even one beer makes my headache worse.
My diet has been going well, and I did not stray, until Friday. I had my physiotherapy session in the morning, and an appointment with my psychologist in the afternoon. Just enough time for lunch in between. At the restaurant I requested food with no grain, no dairy and without potato, tomato or peppers. Salmon was the meat, and two salads. One salad had what looked like mayonnaise as the sauce, but I now suspect it was a cream sauce. Why? Well on Friday afternoon, and all day Saturday my headache reached an 8/10. Horrible. Swimming plus physio, that takes energy, plus the more that 3 hours driving. My energy plummeted and headache pain increased because of this meal (I think).
I could get a small survey done that only required phoning people. It is something. Working in between visits with doctors, physiotherapists and psychologists is difficult. Finding the time, energy and mental capacity is beyond my skill, at the moment.
This week I got to see my neurologist. It has been 3 months since I had my IV steroids and there has only been a deterioration in my walking. I discussed treatment options, and we will try IV immunoglobulin. This will take 5 days in hospital, and will probably happen in about 3 weeks. I hope that the immune boost that this will give might help my walking. If this doesn’t work, then there are two further medications I can try Ocrevus and Mavenclad, not to mention all the alternative therapies.
I also saw my doctor and got my flu vaccination. For the last 20 years I have been getting this injectionand in that time I have had no adverse side effects, and I didn’t get the flu. As you can probably guess, I am a strong proponent of vaccines. He also gave me a prescription for Vitamin D. I will take one strong dose (25,000 IU) every week for a month, after that I will take a daily maintenance dose.
In Ireland the HSE (Health Service Executive) will not pay for a Vitamin D test although Vitamin D deficiency is one trigger for MS. However the medical community is unsure of what the best levels are, and a recent paper indicates that overdosing can have risks too. I have a further complication as I have Sarcoidosis. One impact of this illness is on calcium. Vitamin D increases calcium uptake, and this could put me at risk of hypercalcemia. So now we will have to manage my calcium levels too.
Somehow I forgot to get my Vitamin B injection, so I will have to go back another day to get this. This helps with my energy levels. Any boost I get is positive.
Every 2-3 months I have an hour chat with my psychologist. He taught me my meditation technique and helps me process all the changes happening in my life. This hour costs me, as to concentrate for that long, exposing my emotions, increases my headache to a 7. The time and mental effort is a big challenge. However, I see this as an acceptable toll. It is like going to the gym. After doing some challenging sets your muscles ache, and scream, as you push them beyond their comfort zones. You do this because you know this pain strengthens them. This is how I see these sessions. They are an intense workout for my emotions, and mental attitude. It hurts, but it increases my resilience.
This session was tough as I had to relive how I feel about losing my mobility, and the pain that has robbed me of the ability to live a normal life. These changes also impact my personal life. As each day progresses my reliance on others increases. I cannot do everything I wish, and I have to put that in the past and focus on what I have now. To be grateful for the love that my partner shows me every day in so many small, but very significant, ways. That mug of peppermint tea with a blueberry muffin in the evening makes me feel normal. I cherish these moments, and my focus must be on these, not on my walking speed.
Maybe the exacerbation in my headache was due to this intense session, and not the lunch I ate. It is hard to know which is at fault. My next session will be at the end of November.
The week ahead
I’ll have two physiotherapy sessions next week, Tuesday and Thursday. In between these I will have to get swim time too. During the week I will sneak in some time for writing and looking for something that will earn me a few extra euro.