Julie Russell

I received my diagnosis of MS in Scotland in 1998, after 5 years of living in limbo, not having a diagnosis. Back then it seemed to be the norm not to disclose to patients as it was felt that knowing could exacerbate the condition; MS thrives on stress. The consultant said to me, “so, if I have to put a name to this, I’ll say its mild MS.” He then immediately turned to my husband and said, “So you’re in the Navy, what do you do?” Shell shocked, I stood in disbelief, steam rolled and cast aside like an old glove! I was very much left to my own devices.

Fast forward three years and relocation after my husband completed 22 years’ service. He had turned down the promotion path and extension of service opportunities as he did not know what course my illness would take. We had two young children and fear of the unknown made him cautious.

We cast aside the Naval protection of quarters and base area life and relocated to the North West to be closer to our families for support. Can’t keep a Navy man down though, he became full time FTRS based in Liverpool, becoming the NW regional manager further down the line. Our safety net was reinstated.

Forward another 9 years and my symptoms flared again leaving me with foot drop and I was

constantly tripping up. Cue my new doctor noticing my diagnosis and sending me to Walton Neuro for further investigation. My whole settled snow globe now felt like it had been violently shaken up and my every waking hour was consumed with ‘I have MS’. I was sent into a bereavement depression for the person that I had lost replaced by this defective intruder.

At the hospital I was given a handful of leaflets which led me to internet forum chat rooms. If I wasn’t depressed before, I certainly was now. Everybody seemed really negative with a 'oh woe is me' attitude and I soon began to get angry at the lack of support shown. I scrolled through further MS forums and Mutual Support caught my eye. Mutual Support exists for Serving and ex-Serving members of the Armed Forces and Reserves, their dependants and carers affected by multiple sclerosis (MS). Mutual Support is one of the MS Society’s National Support Groups and is run by volunteers with direct experience of MS and the Armed Forces and provides services and activities based on what people affected by MS have said they want.

Cynical, I messaged them asking what they could do for me that was different from the poor

experiences I had encountered so far. I’m not going to lie, I was extremely sceptical. I needn’t have been. Almost immediately I was contacted by the Chairperson at the time, swiftly followed by communication from the support team, who invited my husband and I to our first of many, Support and Respite weekends. There we were met and welcomed by our specially selected support team hosts for the evening. They guided us through each aspect of the weekend’s proceedings and we immediately felt we had ‘come home’.

The weekend was very informative with speakers including physiotherapists, MS researchers and Sportability. There were therapy sessions available for those that wanted them and I enjoyed a reflexology session from one of the therapists; delightful! More importantly, there was a carers session for my husband and other carers to attend and talk candidly and in confidence. This was completely enlightening for him and he was able to discuss his concerns for the future, reassured that he was not alone in his situation. He came away with a greater understanding of what MS is and how it affected me with solutions to any difficulties we were having as a family living with MS. The support was amazing.

We both left the weekend with an army of new friends, excuse the pun, encouraged and enriched by the fantastic support that we had received and looked forward to the next meeting with gusto.

I can't express how much being part of this group has meant to us. There is absolutely nothing to compare. We have received ongoing help and support which has proven invaluable to us and we have made lifelong friends with our like minded military family along the way. To say this experience was life changing would be an understatement. I have found the old me again, learnt that with a few management techniques life can be as good if not better than before. Encouraged by the positivity I encountered, I completed a degree and went sailing with Oceans of Hope on the Solent and around the Isle of Wight. I joined Sportability, who had spoken at one of the residential weekends and went water skiing, off road driving, indoor seated skiing and indoor skydiving with them.

I now felt able to open the ‘cupboard’ that I kept my MS locked away from the world in. What a relief it was to unburden the weight from my shoulders at last. Finally, with lots of encouragement, I told my friends and colleagues, armed with the knowledge of 'access to work' and the 'reasonable

adjustments' that I could ask for to help me to remain stable whilst in work.

My way of saying thanks to this fantastic charity was to volunteer as the secretary (admin volunteer) of the group and my husband has become the treasurer (finance volunteer).