Difficult decisions forced by chronic illness

Difficult decisions forced by chronic illness

My hand was trembling as I pressed the green phone icon on my phone. Tremor is a symptom of Multiple Sclerosis, but not one of my symptoms. Fear caused this shake, I had decided, and now I had to pass onto the next phase, implementation. The spectre of procrastination would not slow my resolve.

Finally, I had to accept my walking has become so bad I now need a mobility scooter. The Occupational Therapist would be on the receiving end, and I had to wait for them to answer.

Why have I decided this? To make such a choice?

New Job

New job in the university

Last week I started a new job working as a Research Assistant in the National University of Ireland Galway. This first day I had a meeting in the Bialann (the cafeteria) followed by a seminar on writing and time management. The two venues are beside each other, and there are disabled parking spaces close to the building. After parking my car I dragged my way to the entrance of the building. My right leg is heavy, very heavy and I feel like Quasimodo fulling it along after me. Going down the steps was ok, and the automatic door swished open as I made my grand entrance. I needed to go to the toilet after my 75 minute drive. No signs directing me, and so I headed into the food court. Scanning the room I could see no toilets, or signs indicating where they were. 

With no option but to ask someone, I headed to the cashier. If you can walk normally, this would have been a 10 second dash, but for me it was like a 5,000 slow race. It took time, maybe 4 minutes, and the energy I used to achieve this took energy from my already flattened batteries. They directed me to the facilities, and this was another trek. By the time I arrived to the WC, backpack over my shoulder, and stick in hand, I was sweating from the effort.

Returning from this event I now had to figure out how to eat, balancing a tray with a bowl of salad, and a rolling bottle of water. Fortunately, the cashier helped me bring my lunch to the table. Sitting down at last to eat I realised I had lost 25 minutes from the time I arrived in the car park Mobility issues had robbed me of time, and energy. Sitting, crunching my way through the lettuce leaves, I prepared myself for the upcoming meeting. It would take about 40 minutes, I guessed.

More Effort

After the meeting I had to attend the seminar, and again I had another long walk, for me, to get to the room. The energy it takes for someone with MS and mobility issues to do these tasks is much more than for an average person. According to a recent study it take 2.8 times the energy. (https://www.ncbi.nlm.nih.gov/pubmed/31026463?dopt=Abstract). So by the time I eventually arrived my energy way gone, and my headache was at a 6/10 pain level, cruising to a 7. I was present in the room, but I had an opportunity to close my eyes, and to concentrate on my breathing, and the pain started to ease. 

Once this was over I now had to make the journey back to the car. Another Herculean effort. I followed this with a 90 minute drive home. By the time I arrived my leg was like a well-cooked piece of spaghetti, plus the pain in my leg was tough to handle. 

Work is Hard Work

My conclusion, physically, work is hard, and this is an academic job. For the last few days I have been thinking about this, and I do not want a situation where I am fearful of going to work. The job is interesting, and there is much I would like to contribute, and I will not let mobility issues stop me. A solution has to be found.

I have been trying to get a device for my leg which uses Functional Electrical Stimulation to help the muscles work. The physiotherapy section of the health service doesn’t have the budget for me to get this device (it costs €10,000). My annual income has been less than this, and now will be slightly more. The thought of accepting using a mobility scooter is scary. It is accepting my extra disability in a very visible way. It isn’t I am ashamed of using one; I am fearful it will cause me to decline faster. Lost ability will be replaced by a machine.

It is a difficult choice

In the last few days, a friend of mine Jenny (from www.trippingthroughtreacle.com) shared a link to an article in Science Daily (https://www.sciencedaily.com/releases/2018/05/180523080214.htm?fbclid=IwAR3Zb4qhkckee97r98C8xgiZCgiJEKcn3y9zCYT6UQPL1DGYTIfYXrbej6s) which suggests people with MS should stay walking for as long as possible. Why? When you stop walking, and using your leg muscles, it can have a negative effect on your mental abilities, thus hastening your decline, becoming more disabled. 

This is very scary!!

This job is important to me. The income is nice, but give gives me much more than this. It will give me a way of helping my community, by hopefully developing better therapies. It will give me a reason to get out of the house, meet people, wear nice clothes, and talk about something different. Giving me a new purpose. I’ll feel alive. More valuable than any paycheck.

This is the reality of chronic illness. We have to decide, set priorities, and hope we move in the right way. 

Walking, and using my legs, is very important, and so I must continue to go to the pool and exercise there. At home I must climb the stairs, walk around and be as active as possible. This will continue to be on the top of my must-do list. However, the energy I have must be used wisely, and the mobility scooter will help in my management of those precious joules of energy which MS controls. This is my work around, for now. I am sure things will change, and I am still trying to find a way of getting the FES device, but for now, this is my plan.

On to the next stage

The call I made was answered, and we discussed my needs, and they hope to have a solution for me in the next few weeks. Now I must wait. My shoulders are less heavy now I am doing something, and I have a plan of action, based on listing the pro’s and con’s.

I just hope I have made the right decision. 

2 thoughts on “Difficult decisions forced by chronic illness

  1. Hi Robert,
    That article freaked me out too. But I think you have hit the nail on the head; if you conserve your energy by using the scooter, you hopefully will have more for the pool and stairs. It is a balance I guess? So pleased about your job, I think that the mental and social stimulation will make such a difference to you. Plus the feeling of independence is so nice when you get used to the scooter. Once I had mine, I couldn’t believe that I had left it so long!
    Can’t wait to hear how you get on, best of luck x

    1. Thanks Jen. It is really exciting and I think I am the first paid patient representative in a study in this university. A big responsibility. ?

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