About Me and My MS

Hi, I’m Jen, a 40-something MSer juggling being a Mum to two gorgeous kids and my health.  I was awarded my ill-health pension from the NHS as regular, 10-hour days were becoming tricky. I still love to learn and do, so I work a few hours a week from home in a way that is more manageable for my health.  I was diagnosed with Multiple Sclerosis when I was 15 years old, so have had it veeeery for a long time – I even had symptoms as a child.

I was initially diagnosed with relapsing-remitting MS (RRMS) but have now transitioned to secondary progressive MS (SPMS) – although I still had active inflammation, which is why I qualified for HSCT treatment in 2019 (see the HSCT Chronicles, for more info).  Becoming SPMS has been quite a shock, as I was actually very well up until about 10 years ago when my health started deteriorating.  Fatigue, spasticity and a mobility scooter all now feature in my everyday life and I have had to wave goodbye to running and aerobics, late nights and dancing.  As a result of my health struggles, I have started taking an active interest in healthy eating, exercise to stay mobile and meditation.  I love adapted yoga, food, coffee, interiors, family, travel, reading, movies, crochet and dairy-free hot chocolate, not necessarily in that order!

As my MS has changed, the need to talk and engage with other MSers and people with chronic illnesses has become so important to me. I thought a blog would be a good way to put down some of my random thoughts, to educate others about chronic illness and connect with other people like me.

I like to think that, despite my diagnosis, I am a positive person.  Don’t get me wrong, life is definitely not a bed of roses.  I spend a lot of time in my actual bed and have the usual parenting guilts that other parents have!  But I remind myself that I am doing the best I can and that that is enough.

I love to connect with others and would really value any thoughts you may have about my blog.  Please do feel free to drop me a line or follow me on my social media.

 

50 Comments

  2. Hi Jen, i hope you are having a good glamping holiday! I cannot wait to hear about it! I have a question for you, i see you are following the OMS diet (no meet, no milk…) , is that correct? I don’t beleive in diets myself but i am feeling so desperate that i am going to give it a go. Does it work for you? Did it make any change? How long have you been on it for? I look forward to your answer …. Take care Reme

    Reply

    1. Hi Reme,

      I have to admit that I was at the ‘desperate’ stage when I started OMS! I have had MS for more than 20 years and started OMS about three years ago. Basically, it is reducing saturated fat, which means no meat/dairy and eating a plant based diet – though fish is allowed. It was hard at first, but it has helped in regards to my tiredness. I have to admit that I haven’t noticed much of a difference (yet!) with my mobility, but it is a long term approach and I like to think that I am at least doing the best that I can for my body, to keep it as healthy as it can be with MS.

      OMS is a lifestyle – so it isn’t just the diet but also exercise (within the limits of what you can do), meditation and VitD. I was sceptical before I started but, honestly, now I prefer to eat this way and meditation makes me feel so much calmer and in control. I struggle a bit to find the time sometimes to fit the exercise and meditation elements in, but I feel so much better when I do. I have linked some research into lifestyle factors (diet etc) on my Facebook page (Tripping Through Treacle) so it is worth checking that out. There is evidence diet etc helps, especially the earlier you start (I think that is key).

      Best of luck! My glamping holiday was great, albeit tiring! I will be blogging it soon 🙂 xx

      Reply

  4. Thanks Jen and a great blog. Also nice to connect with you on twitter and please keep your posts coming through – Its always an inspiration. Also happy if you can write a guest post on my blog (Traveling with MS) on your glamping experience and disability – It will be an honor. Thanks and keep safe / healthy always. best wishes Abhishek

    Reply

    1. Ah, thanks for that Abhishek, so nice of you to ask me to do a guest post on your blog! I’ve also recently been to Bruges as a disabled traveller, that might be slightly more interesting! Will just need to have a bit of time as I have to work around the kids 🙂 Lovely to connect – best wishes, Jen

      Reply

  14. Hi. I’m also looking to connect with others who are experiencing similar circumstances. I have Rheumatoid Arthritis. I’ve been relieved to find so many people on here that are giving support and encouragement. Glad to have found your blog – thank you 🙂

    Reply

  16. […] It’s so lovely to hear from Jen and find out more about her mindfulness journey.  I found this a particularly emotional guest post to put together.  Maybe it’s because I think back to knowing Jen from when we were teenagers and think how quickly that time has flown. Or maybe it  was Jen’s words about appreciating what we have and seeing how quickly the kids are growing up that has really struck a chord with me tonight.   Anyway a big thank you to Jen for taking part in the ‘Mindfulness and Me’ guest series and good luck with getting hubby on board :-).  I would really encourage you to vist her blog here. […]

    Reply

  21. Hi Jen, I’ve just found your amazing blog and I would like to get in touch with you about a potential opportunity 🙂

    Is there an email address I can send some info to?

    Many thanks,
    Jessie

    Reply

  26. Just wrote a post I lost it forgot to submit! Hope you don’t get two… v boring

    Hi )en long term spms-er I like you but a bit further on:
    . 15 years on I’m “happily” ensconced in my moulded seating wheelchair & despite high tone spasticity (the running a marathon constantly 24×7 & flailing legs + body lying down type if not medicated) I at peace 98% of my year with my INDWELLING BACLOFEN PUMP Giving me 24hr baclofen in liquid form delivered automatically to my lower body nerve plexus between L1&2 vertebrae -sorry about the techie bit but basically it delivers 260 microgramS instead of approx 100mg with no side-effects a day. With no side-effects except a little tin in my side just under the skin which gets refilled 2xyear.

    Before I got taken off my feet I bought a walking aid for someone with foot drop it’s called a MUSmate it would have kept me walking had I not gone into hospital at moment have a look online and if you think it could help you at home even if not outside with sticks then I’m happy to send it to you. I did tried to sell it but no luck it was when I have more money I bought it. Not looking for money but someone who can use it PM me if you areinterested
    I think your blog is brilliant ~ I want to do one but not just MS ~more lifestyle day to day to keep me going Anyway great to ‘meet’ you i’m so impressed with the HSCT Well done 👏 sadly I am too old & too far gone I was looking at it 20 years ago but it always seem to be 20 years too late or would that be too early for everything!

    Reply

    1. Hi Marjorie! Thank you so much for your recent comments on my blog, I am sorry that it has taken so long to get back to you, things have been crazy with the kids’ homeschooling and then me trying to structure everything around my work as a speech therapist (from home) and trying to keep up with my stretches and yoga etc.

      The baclofen pump sounds really interesting – my MS nurse mentioned it once but I haven’t actually met her to find out more about it! I often wonder if that would be better than the oral baclofen that I am on. The botox has done very little at the moment but they said that they were going to be very conservative with the amount that they were going to put in at first as they didn’t want me to get too floppy! I will have a look at the MUSmate, that sounds interesting… I am being supported by a neuro physio who wants to try me with a splint and then an FES (functional electric stimulation thing) so perhaps I should try those first. Thank you so much for your offer!

      Lovely to hear from another SPMSer 🙂 xx

      Reply

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