#MSMAKESME tired, afraid, frustrated, hopeful, creative

For MS Awareness Week, writer and host of Let’s Talk MS Podcast Ian Cook explains how MS makes him feel, and why

#MSMakesMe tired

The reason for saying that multiple sclerosis (MS) makes me feel tired are obvious to anyone who has the condition. Tiredness is with you ever day, it never really goes away. And sadly the longer you have MS the worse tiredness gets. You notice it takes more energy to do the same things for the simple reason that demyelinated nerves require more and more energy to do less and less,  and this has an impact on what you can do. So you have to plan for energy saving to carry out simple activities like shopping and going out for a coffee, even making a meal.

#MSMakesMe afraid

MS makes you fearful of what the future holds for me. I am 64 and have had MS for 30 years. I am 6 on the EDSS scale and I know on average a 64 year old male has an average of 20 years left, and that MS can knock 5- 10 years off that life expectancy. As I approach my retirement I ask myself – how much time have I left – 10 years? And what sort of quality of life will I have as I enter the end of my life. It’s frightening stuff.

#MSMakesMe frustrated

MS makes me frustrated. There are so many things I would like to do but the planning I need to make for even the simple things that I used to do without even a thought is gone. Simple things are now so onerous that half of the please is lost. Gone is the spontaneity of my earlier days when I could just take a holiday by hopping on a plane and wandering around a European resort. Now I need to ensure I have enough catheters, assistance, mobility aids. The carefree life that I loved is gone. I find this frustrating.

#MSMakesMe hopeful

I am a “glass half-full” sort of person and frankly optimism keeps me going. Sometimes I have a day-dream that there will be a breakthrough in MS research and even that there will be a cure and I can suddenly, or over a short period of time, be restored to the state of health I enjoyed before MS entered my life. I have little day dreams of walking unaided from my flat to the local shops (400 metres) having a coffee or beer anywhere I want and going for a pee without the bother of finding an accessible loo, and taking out a catheter. And then walking back home unaided. This little dream might not sound much to other people but it fills me with hope. “Dream on” I say, and never give up hope.

#MSMakesMe creative

The one thing I have learned in my 30 year “MS career” is that by being creative and open-minded you can find solutions to a surprisingly large number of problems. I constantly join organisations like MS-UK, Bladder Health UK that, in my opinion, are full of creative free-thinkers.

These groups often help me find solutions to  problems that I have not found elsewhere. To give one example – Bladder Health UK told me about a urologist  who had a new approach to tackling urinary tract infections (utis) which had dogged me for years. I promptly made a private appointment, the urologist prescribed me a drug – methenamine Hippurate – and the uti problem disappeared and has not recurred or more than five years. I wrote about this experience which you can read here.

Creativity and “thinking outside the box” has really worked in managing my MS.