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13 April 2017

10 things I have learnt from my journey with MS

Lynne shares her learnings from her journey with MS

I recently started a small course one night a week where I have met a new group of wonderful people. I’ve been really enjoying it and it’s been going on for a few weeks now.

Sharing thoughts on MS

And inevitably the ‘I have multiple sclerosis’ chat has had to come out. I’m not bothered by telling people I have MS but it’s not something I feel that I have to openly share. By sharing this information I have received some of the reactions that are typical when you tell people you have MS. Reactions that I’d forgotten about because it’s been such a while since I have had such conversations.

Looks of sympathy, worry, along with well-meant comments advising me to not give up hope. Of course everyone with MS is different and people react based on their knowledge of the disease which, in the worst cases is quite frankly terrifying.

However through this I realized how far I’ve come in the nine years since MS was first mentioned to me by a consultant at the hospital. I used to get really upset by these reactions and feel the fear that people felt for me. Yet it no longer has the same effect it used to, mainly because of the very different place I am in now. With all this in mind,

I wanted to share some of the things I have done since my diagnosis to turn my perspective right around. I hope that someone somewhere may benefit from reading what has worked for me.

1) Allow yourself to process it all

Something like this is a big deal. It’s a life changer and it’s perfectly OK to cry, get angry, be scared and feel all the other emotions that come with it.

2) Find out about your condition

As much as you can. Do this from recommended sources. Avoid chat forums. In my experience they have often been the most negative places. Understandably some people need to let out their emotions but people tend to use them when they are scared or sad rather than when they are happy and adjusted.

3) Keep in touch with your medical professionals

My MS nurses are actually amazing. Their patience and knowledge has been such a comfort whenever I’ve gone through tough times and also good times.

4) Surround yourself with your true friends

Chances are when you go through something like this you will really find out who your true friends are. Cherish them. They will be your rocks. You are still you and can still be there for them too.

5) Go out and do the things you like

Just because you have something new to tackle it doesn’t mean you have to let it stop you doing the things you love. You are still the same person you were before. Put your make up on, go watch a movie or go to the theater. I love live music and going on holiday. Although you may have to adapt things, such as having to go in the seated areas rather than standing, it doesn’t mean you can’t still have an awesome time. Since my diagnosis I have been to lots of concerts and gone on lots of holidays. I often find it has a positive effect on my symptoms. I think anything that relaxes you or makes you happy has a massively positive impact on symptoms.

6) Let go of what you can’t change

My MS is entirely invisible and some of my symptoms include blurred vision, dizziness and fatigue. Once I’m fatigued I’m unable to concentrate so conversations and remembering things are much, much harder.

As a result of this it has affected my working life. I’m no longer able to work a full day. It has stopped me in my career tracks.

Sometimes this still upsets me as I know what I was capable of. However, it now means that I generally get to see the school assembly, participate in activities and have more time with my children.

These are positive things so I choose to focus on these aspects rather than the things I can’t do. I look for the blessings in my life. Besides, I’m convinced I will find the right career options that fit in with everything anyway one day soon!

7) Do your own research

A few years ago I was fed up with being told and thinking there was nothing I could do to help myself. I started to do my own research about things that could help to improve my condition. I quickly found that actually there is a lot of things you can do to help.

I found the work of Professor Swank and then Professor George Jelinek and Overcoming MS. On reading this evidence-based program I have adapted my diet and began meditation to help me manage my MS.

Doing this really marked the point when things started getting better for me. My symptoms improved and I no longer felt as though I was a slave to my MS but rather that I was able to manage it.

8) Allow yourself a bad day or two or three but then no more

When my symptoms are flaring up I let myself feel miserable. I’m normally very positive and upbeat but sometimes having MS is just rubbish and you feel rubbish.

So I will let myself feel miserable and annoyed. However, when I feel this way I normally allow myself the day and then think, “I’m going wake up tomorrow and feel better and get my positive head back on.” That way I get rid of the bad feelings but don’t let them consume me.

9) Try new things

I used to avoid trying things in case it was too hard and set off my symptoms but I’ve got braver over the years. Obviously there’s things that might be a bad idea for your condition but sometimes you might surprise yourself and really enjoy something.

10) Dare to dream

Just because you have a chronic condition does not mean it has to have you. Still look forward to things in your life and go towards your dreams. Medical advancements happen all the time. You don’t know what will be available in the future.

Since my diagnosis there have been at least 4 new medications that have been developed to treat MS.

Can you imagine how things might be in another nine years. A combination of these things has helped to take me from a very negative place to a much more positive one. I live a very happy life which I am very much enjoying. I will never forget how absolutely petrified I was back at the time of my diagnosis.

It was a fear I had never experienced and I always feel a pang of sadness when I hear of someone going through something similar because I can really relate. But there is life at the end of this and I just wanted to share these things in the hope that someone, somewhere can benefit from my experience.