My Life with MS and Chronic Pain – Weeks 6 & 7

When you have a chronic illness, it often interferes with your plans. It was my intention to write a few posts last week when I was in hospital.  Unfortunately, I could write nothing as the treatment and the hospital caused my pain to increase to a level that writing was pointless.  I didn’t have the energy or the ability to concentrate.  This week I will write a review of two weeks.

Diet

The Autoimmune Protocol Diet can be restrictive when you are trying to eat away from home. I noticed this when I was in hospital last week. In fact, I thought the hospital could not cater to my dietary restrictions, so I brought a bag of food with me that was quite impressive.  In the bag I had blueberry muffins,  nuts,  tinned sardines in olive oil,  and even some dried fruit.  I was prepared.

When I arrived at the hospital, it was just before lunchtime which is the main meal of the day.  They asked me if I had any special dietary requirements and I said “yes”  and then listed all the foods I could not eat.  The face of the person I was talking to sagged.  She turned her head, looking me in the eye and said “what are you allowed to eat?”.  We both laughed, and I explained that meat and vegetables are generally ok.

With this in mind she let me know what was available for lunch and she said she would make sure that the bread stuffing wasn’t on the plate and that they would put no sauce on the vegetables. She even made sure I would get boiled potatoes instead of the usual mashed potatoes. 

Later when the food arrived, I received a plate that had stuffing on top of the pork and a white sauce poured all over the cauliflower.  I looked at the nurse and said “I can’t eat this.” she lifted the plate and said she would see what she could do.  Before she turned around somebody arrived in to the ward with another plate of food and she said “sorry, this is your food.”  The tray landed beside me and she lifted the cover.  Perfect.  Exactly what I needed and for the rest of my 5 days in hospital the catering staff went out of their way to ensure that the food they gave me suited the autoimmune protocol diet.

Exercise

2 weeks ago I had a walking test to see how my speed had improved since starting the using the FES device. I had to do a 6-minute walk and this time I could cover 220m instead of 110m.  This was a phenomenal achievement in the 4 weeks.  The hard work of attending physiotherapy twice a week was paying off.  I attribute the success to several factors.  They are:

1. physiotherapy 
2. exercise
3. the autoimmune protocol diet, and
4. CBD oil

The physiotherapist also checked the strength of my right and left leg. Both legs had doubled in strength.  On the day following this test I stopped taking the CBD oil, and I noticed within 4 days that my walking has started to dis-improve.  It shows how important all the factors are in contributing to my general health. 

Medical

Last Monday I went to the local hospital to have a 5 day course of intravenous immunoglobulin to treat my reducing mobility and also the chronic pain I have had for the last 4 1/2 years.  The hope is that this treatment would slow down or stop my loss of mobility and also the pain I’m experiencing.

Each session took between 4 and 5 hours and over that time I had to drink 2 L of water.  I was in a ward with two other men which I thought would be fine.  I didn’t realise how much I had isolated myself from the general environment that people live.  In the ward there were two radios on,  fluorescent lights and all the sounds of a busy and active hospital.  People talking and various alarms going off. 

All this stimulus increased the pain I had that I have in my head.  It grew from its usual 5/10 to an unbearable 8/10 by the time it reached 6 pm.  After some discussion with the staff I could find a room I could stay in for the night with no light or sound.  The pain was intense, and it lasted for such a long time.  The following day this repeated and the staff found a room I could have for myself on Wednesday.  This helped a little but the pain still rose to an 8/10. 

In my life at home I have isolated myself from all these sounds, and also from artificial light.  I realised how much my life has changed and how different I am to a normal person.  My great intentions of writing blog posts,  doing work on my novel,  and even drawing disappeared.  I ended up watching some Netflix series and I honestly remember none of what I watched.  During the week I maintained doing my meditation,  journal and also breathing exercises to control my reaction to the pain.  It didn’t reduce it but I think I was more tolerant, I hope.

Mental Health

The last 2 weeks have been a rollercoaster of emotion.  In the first week I felt the tremendous excitement of improving my walking and pain clouded the following week in hospital.   Keeping perspective during the events of the last 2 weeks was achieved by continuing my meditation,  journalling and seeing gratitude for the things I have.

The Week Ahead

This coming week I will attend the European Patient Innovation Summit in Dublin and this should be very exciting.  To see how technology and innovation could be able to help the lives of patients throughout Europe and the rest of the world.  To be part of this is an honour.

Other posts in this series

Week 1, week 2, week 3, week 4, week 5