Logo Carenity
Logo Carenity
Join now! Log in
flag en
flag fr flag es flag de flag it flag us
Home

Forums

Latest discussions
General discussions
See all - Forum index from A to Z

Conditions

Fact sheets
See all - Disease index from A to Z

Magazine

Our featured pieces
News
Testimonials
Nutrition
Advice
Procedures & paperwork

Medications

Medications fact sheet
See all - Medication index from A to Z

Surveys

Ongoing surveys
The results of the surveys

Join now! Log in
  • Forums

    • Latest discussions
    • General discussions
    • See all - Forum index from A to Z
  • Conditions

    • Fact sheets
    • See all - Disease index from A to Z
  • Magazine

    • Our featured pieces
    • News
    • Testimonials
    • Nutrition
    • Advice
    • Procedures & paperwork
  • Medications

    • Medications fact sheet
    • See all - Medication index from A to Z
  • Surveys

    • Ongoing surveys
    • The results of the surveys
  • Home
  • Forums
  • General forums
  • Good to know
  • Focus not on what you've lost, but what you have and what you might gain!
 Back
Good to know

Focus not on what you've lost, but what you have and what you might gain!

  •  59 views
  •  0 support
  •  2 comments

avatar Gilda

Gilda

Community manager
Edited on 27/06/2015 at 22:51

Good advisor

avatar Gilda

Gilda

Community manager

Last activity on 03/02/2023 at 15:26

Joined in 2015


710 comments posted | 120 in the Good to know group


Rewards

  • Good Advisor

  • Contributor

  • Messenger

  • Committed

  • Explorer

  • Evaluator


 View profileView  Add a friendAdd  Write

Hello everyone! 

Back to sharing with you members' life stories. 

This time I bring you Statto's (Jamie) story, in which he tells us what is like to be a loving husband and father and living the life to its fullest, while overcoming Multiple Sclerosis. 

Here is his interview: 

1. Hello Statto, could you introduce yourself in a few lines? 

Hi, I'm Jamie and I'm 40 years old and live in Southern England with my wife and two teenage children. Before becoming ilI I was an Associate IT Director running a fairly large technical group in the Healthcare Industry. I'm a bit of a science and comic book nerd but balance that off with my love of Ice Hockey and football both only as a spectator. I also enjoy the gym and recently discovered I enjoy scuba diving. 

2. How did you found out you had MS and how did you get your diagnosis? (was the diagnosis quick or was it difficult to get?)

It's not an easy answer as I was misdiagnosed for 7.5 years! However it started off with a numbness radiating down my leg. I assumed I'd ruptured a disc in my back as I always had some sort of back injury on the go, however they quickly ruled that out. They referred me to a neurologist and the long process of diagnosing me began. After about a year I was diagnosed with NeuroSarcoidosis, which was very rare but was the only possibility as everything else (including MS) had been ruled out. However after 7 yrs of poor treatment response a review of my diagnosis was done and this time my brain scan lit up like a Christmas tree, presenting as classic MS. A lumbar puncture then came back as positive for MS, despite being negative 7.5 yrs earlier. That was just this past October.

3. What was your reaction when you found out you had MS?

Mixed. I knew before the new diagnosis was confirmed that it was back on the table as a possibility. I saw that possibility as being good as it was neither better nor worse from the point of view of symptoms. However there was much more support and better treatment options available. So I was in fact hoping for a diagnosis of MS which felt a bit weird. What MS did bring with it was a better understanding of prognosis which made me have to face up to a few things which was harder than I thought and my mental health was definitely affected. 

4.     You formally have MS since 2014, what have been the major impacts of the disease in your everyday life? (the relationship with your family and friends, complications…) 

When the symptoms started 8/9 years ago it was really a worry but I was fairly stoic about it all and was pretty stubborn about it all. I resisted help and aids and waited far too long to get a cane, which inadvertently probably caused my family more worry. It finished my 5-aside football career, which was probably a good thing as I was always injuring myself (and I wasn't that good either!).  However after few years it started impacting my work. My company was fantastic and very supportive but just over 5 years ago I had to give it up. I fought it hard as I enjoyed working but I was no longer doing myself or the company justice. 

Whilst I tried to keep busy and stay positive that loss of structure was hard. I started to become isolated socially and more introverted, later I learned that it was probably the start of me getting depressed. It was also creating a lot of concern in my family and friends and definitely was very hard on my wife and children. I didn't realize it but I started leaning on my amazing wife hard, too hard. My wife ended up holding everything together and it was not fair on her. It's probably what I find the hardest to process. Even though I know it was not really my fault I'm not sure I'll ever truly forgive myself as she was in so many ways having to do it all on her own. 

In the short term getting the correct diagnosis was tough as I was formally diagnosed with depression at the same time. Facing up to the realities of everything was incredibly hard and I don't mind admitting I nearly fell apart completely. However my wife and kids served as my anchor and I began to fight back and started putting myself back together. It's taken some time but with their help and support I'm coming through the other side. My wife has stuck by my side and she is truly wonderful. Still the love of my life. My kids have also helped me just by being them.  They will always do anything to help me but mostly they just fill me with a sense of pride. 

5.     As for today, how do you manage your life with MS? What practical advice could you give to other patients on how to cope with MS?  

Physically I take everything one day at a time. I look after my health much better than I used to and have my weight down from 24 to 16 stone, which isn't too bad as I'm 6' 4" tall. Still a bit to go though. I started to attend a regular physio class run by the MS Society which has been a huge help both physically and socially. 

However I've learned that the most important thing to look after is your mind. Firstly be honest with those around you and let them help and support you. Trying to protect them by playing down how you feel, fools no one and puts up barriers. Those closest to you know when you are struggling, no matter how hard you try to hide it. Make sure you keep structure in your life. I used to work 60hr weeks and going from that to nothing leaves a huge void.  Since rebuilding myself I've started attending the physio class, I go to an informal MS Coffee morning and have got involved in a local charity both as a community volunteer and a trustee. My life's not the same, it’s just different. Accepting that fact was key as it allowed me to let go of what I had lost. 

I feel strong mentally once again and feel myself for the first time in quite a few years. My wife, who has been a rock throughout, must have missed me. I'm now in a place where I can be a rock for her once again. I'm back and she deserves that. 

6.     What positive message would you like to share with our readers/viewers?

Focus not on what you've lost but what you have and what you might gain. It used to be hard to leave the house but now I find it hard to stay in. I still have so much and so much to look forward to. Last year I became an occasional wheelchair user on the back of two very hard relapses. This year I've used it once.  I'm getting stronger and my mobility is improving every day. I also discovered scuba diving less than a week ago and now plan on getting PADI qualified. The truth is I probably wouldn't have done it had I not become unwell as I never had the character to overcome my anxiety around water. Now I've learned to embrace life and make the most of everything. The MS won't hold me back anymore, I won't let it. 

Jamie

___________________

Don't forget to share your comments and like it if you find it useful! 

All the best,

Gilda

Follow

Other groups...

Good to know
All things Christmas
Carenity News
Feedback for Carenity
Fun and games
How to use Carenity
Let's talk about COVID-19
Life beyond illness
News from the media
Procedures and Paperwork
Youth patients with chronic conditions

Give your opinion

Survey

What do you think about the Carenity Forum and community?

Survey

How do you use Carenity? Share your experience!

All comments

avatar exit

Unregistered member

12/06/2015 at 12:32

As always, I love the stories and to see how we are all going through rough times but there has to be a positive attitude always in the middle, if not you just crumble down.

Thanks @Statto for sharing your story with us and kudos for the scuba diving it sounds great if it is the kind of thing you like :)


Focus not on what you've lost, but what you have and what you might gain! https://www.carenity.co.uk/forum/other-discussions/good-to-know/focus-not-on-what-youve-lost-but-what-you-have-381 2015-06-12 12:32:23

avatar Yank34

Yank34

Ambassador
27/06/2015 at 22:51

Good advisor

avatar Yank34

Yank34

Ambassador

Last activity on 02/07/2025 at 16:40

Joined in 2015


291 comments posted | 28 in the Good to know group

17 of their responses were helpful to members


Rewards

  • Good Advisor

  • Contributor

  • Committed

  • Explorer

  • Evaluator

  • Friend


 View profileView  Add a friendAdd  Write

Stratto (Jamie) - absolutely LOVED your story! HUGE congratulations on losing so much weight and simultaneously becoming so much healthier!  I personally think medical conditions like MS is much harder to deal with for men than women just because of the natural, inherent gender differences (have found men and women think so differently - possibly due to sociological as well as hormonal influences)?  I consider myself so, so fortunate that my MS really didn't start to become really, obviously, problematic until I was in my 50's and therefore my heart goes out to anyone younger.  Sooooo agree with so much you said/shared with us - our minds are more problematic than our physical problems, it's important to let people know how you are feeling (I hid so much for so long) but have now reached the point where I can't do this anymore and actually find this so much easier, more honest and have also helped me accept who I am and what I can and can't do at any particular time.  No one is an island......there will always be times when we can be peoples' rock(s) and other times when others need to be ours.  So, so glad you shared your story with us - good on you and sure it will help so many others.  Keep up the good work, know you will! x

See the signature

Ann


Focus not on what you've lost, but what you have and what you might gain! https://www.carenity.co.uk/forum/other-discussions/good-to-know/focus-not-on-what-youve-lost-but-what-you-have-381 2015-06-27 22:51:10

Give your opinion

Survey

What do you think about the Carenity Forum and community?

Survey

How do you use Carenity? Share your experience!

Articles to discover...

Screens and the brain: What are the risks of overuse and how can you protect yourself?

28/06/2025 | News

Screens and the brain: What are the risks of overuse and how can you protect yourself?

Women's health: Why is medical research still falling short?

21/06/2025 | News

Women's health: Why is medical research still falling short?

Can you train your brain to feel happier, scientifically?

14/06/2025 | Advice

Can you train your brain to feel happier, scientifically?

Cognitive behavioural therapy (CBT): A way to better live with your thoughts and emotions

09/06/2025 | News

Cognitive behavioural therapy (CBT): A way to better live with your thoughts and emotions

NHS - Get help with prescription costs

12/11/2019 | Procedures & paperwork

NHS - Get help with prescription costs

Diclofenac to become a prescription drug

21/01/2015 | News

Diclofenac to become a prescription drug

Opioids Causing Concerns, Problems for Chronic Pain Patients

14/10/2016 | News

Opioids Causing Concerns, Problems for Chronic Pain Patients

Do you have the winter blues?

21/10/2014 | News

Do you have the winter blues?

icon cross

Does this topic interest you?

Join the 500 000 patients registered on our platform, get information on your condition or on that of your family member, and discuss it with the community

Join now! Join now! Join now! Join now! Join now!

It’s free and confidential

Subscribe

You wish to be notified of new comments

 

Your subscription has been taken into account

Join now! Log in

About

  • Who are we?
  • The Carenity team
  • The Science and Ethics Committee
  • Contributors
  • Carenity in the news
  • Certifications and awards
  • Data For Good
  • Our scientific publications
  • Discover our studies
  • Editorial policy
  • Code of conduct
  • Our commitments
  • Legal notice
  • Terms of use
  • Cookies management
  • Contact
  • Carenity for professionals

Quick access

  • Health magazine
  • Search a forum
  • Learn about a condition
  • See medication reviews
  • List of forums (A-Z)
  • List of condition info sheets (A-Z)
  • List of medication fact sheets (A-Z)
  • Language flag fr flag de flag es flag it flag us

The www.carenity.co.uk website does not constitute or replace professional medical advice.