Multiple sclerosis: The rules of my illness have changed

Adjusting to living with Multiple Sclerosis requires a strength of will. It is hard. I know this, as I have had to manage how I adjust to the many changes it has brought in my life. It, this beast of an illness, has an influence on everything. How I react has changed over the last three decades, initially it was fear of the unknown, how this disease would change how I interact with the world. Now, I have the tools to manage how I react. It isn’t resignation to the perils of sickness, but adaptation to the new rules.

What happened?

In April/May of 2022 my fatigue was worsening, and my ability to walk reduced. The positive effect of my last steroid infusion had gone, and it was time for another dose. I contacted the hospital, and after a very difficult session in the hospital (you can read about it here) I was admitted for my infusion in early June. This had the desired effect, and I was back on my feet again.

However, in November, the decline had reached another low, and after some discussion with my consultant, I had another infusion, with similar positive results. The infusions were becoming more frequent, and I had finished my work as an Embedded Patient Researcher in June, and had applied for a social welfare support, Invalidity Pension. In November I learned my application was approved. My life was entering a new phase.

There were worsening symptoms too. My stomach and bowel were rebelling. Chronic reflux, all day, and constipation and diarrhoea, sometimes in the same day. I needed to resolve these, along with my bladder issues. The Urologist explained my issue as a spastic sphincter in my bladder, and I wondered if the same issue caused my reflux. In early January I had a colonoscopy and gastroscopy to find out what was causing these issues, and I also had a bone scan (steroids can cause osteoporosis).

Immediately after the colonoscopy and gastroscopy, the nurse gave me a brief idea of what was happening. Everything looked healthy, except for some inflammation in my ileum, part of my small intestine (you can see all the parts here). I won’t know all the details until I see the gastroenterologist in April, but based on what I do know, I saw a dietician. The likelihood is I have Irritable Bowel Syndrome, which is probably caused by one of the medicines I was taking for my spasticity.

To treat this problem I had to stop eating many foods. Nearly all fibre is gone, so I had to find an alternative to porridge in the morning for breakfast. I also had to stop drinking my freshly squeezed orange juice too. Leafy greens are gone, as are tomato’s. The range of foods is very limited, as most things cause me problems. I have been taking probiotics for the last month and a half, and now I have started taking cider vinegar, to avoid taking more pills.

On my birthday, in January, I had a bone scan, and I got the results of this last week, and it shows I have osteopenia. This could lead to osteoporosis. Too frequent steroid infusions is probably the cause, and now I am taking calcium and Vitamin D, to help offset the damage done. Now I have an issue, as I will not be able to have as many infusions, and so my mobility will get much worse, before I can get a treatment. The decline has already started, with me taking the stairlift most evenings to get to my bedroom. I probably won’t be able to have another infusion until November. Along time yet.

The Rules have changed: What can I do now?

A very difficult question, as my options are reducing all the time. I remember when I had to stop being a market researcher (see my post Transition Day) and the impact it had on my mental health. This was improved when I started my role as an Embedded Patient Researcher on the COB-MS feasibility study. However, I am not allowed to do any work, paid or voluntary, as it is one of the conditions of being on Invalidity Pension. My voice as an advocate has been limited by this odd rule.

I am doing physio, the MS Society of Ireland are running a MoveSmart program, which will help me slow the decline in my mobility. The second session was on Thursday, and it was tough. One of the exercises is to march in place, but I am now a specialist in the one legged march, and I wonder why I am going around in circles. ???? This programme might also help my balance, and bowel/bladder problems too. I need to be realistic, I will not cure my problems, but I might be able to slow the progression.

My new plan

My day is short, as it takes time for me to get into the world, and have my breakfast, shower, etc. Fatigue has set some strict rules about what I can do, and how fast I do them. By 3:30 my energy is fading again, so I try to do something positive in the late morning, early afternoon. For now, I have started to write here again, giving me a focus. I am also sharing my podcast on YouTube, and if my energy permits, I might start recording podcasts again. These all use precious energy and time, so I need to be smart. This isn’t easy.

The one thing I must avoid, it to end up spending my day on the couch, watching TV. It is very tempting to opt out of active life. My list of chronic illnesses, along with restrictive social welfare rules, push me to do nothing, to waste my time in this life. I find this very hard, and when I wake up in the morning, I can face the bleak view of a day with nothing new, no purpose.

Adjusting to these new rules is hard. Somehow I have to accept the change, or lost ability, and to focus on the things I can do. Once I know what is possible, then I need to do this to the best of my ability. I will never be the best in the world, it isn’t possible, but I can do my best. If I can do this I will be happy. In addition, I have to keep my daily mindfulness practice, and daily journaling. These have sustained me through the hard days, when my symptoms take centre stage.

How do you manage when your rules change? What do you do?