I was told I had MS on the 9th December 2013. I’d been having issues with my eyesight and my balance was starting to falter. The eye hospital sent me for an MRI because they couldn’t work out what was causing my eyesight issues. I went for the scan and was cycling home from work when the phone rang. It was Dr Oakley, my GP, saying we’ve got the results and can you come into the surgery? I knew then.

You never think that you’ll wake up one day and be told that you’ve got an illness that you’ll never recover from.

Following that, I went for a lumbar puncture and another MRI scan. I got the official diagnosis on March 25 2014.

Since then, it’s been progressive. When I was diagnosed they didn’t have the category of ‘relapsing progressive’, but now I see that that is what I had. I had relapses at first, but I was gradually getting worse. I went from walking, to walking with a stick, to using a rollator, and now here I am in a wheelchair. I can bear weight on my legs but I can’t walk. I can stand and do transfers but that’s about it.

I live on my own with my cat. I have carers 3 times a day to help me out. I was born right-handed but MS has weakened my right side to the point where I can no longer write or operate a knife. I use my left hand a lot more, as that is still reasonably dextrous. I keep meaning to learn to write with it (I know someone else with MS who was in the same situation who did it so it’s possible) but I am lazy and haven’t put the time in!

I started my degree in Environmental Science when I was 26, way before my diagnosis, because I was in a job I didn’t like. I had no qualifications and saw myself moving from crap job to crap job. I wanted to move up, not across. I have always loved nature and decided that I wanted to go into conservation work. I wanted to do something good for nature, something good for the world. Even a small thing is a positive difference. I was working full time and doing my degree with the Open University. When I started, I thought I’d graduate in my early 30s and it would be the springboard I needed to get into a worthwhile job.

How wrong I was.

I did the first two modules and then MS dropped a bomb into my life. I decided to give up my degree as I wasn’t that far in and I was dealing with a new diagnosis. It was scary and I couldn’t get my head round it.

5 years later, I was still in the same job, and my disease was progressing. I decided to go back to study and get it finished, even though I knew at that point that I couldn’t do the work that I had originally wanted to do because my mobility was getting worse. I still enjoyed the learning process and I did finish it in 2023 with a first! It was hard going towards the end. I wouldn’t have got through covid without it. I had to self-isolate because of my MS but it gave me something to focus on. Finishing it was bittersweet for me. I am proud of the achievement but I can’t use it for what I wanted.

So now, I’m unable to work and my full time job is managing my condition. I live on my own and every day is a struggle. I am grateful for the time it’s given me to listen to podcasts and learn new things. I listen to a lot of science and environmental stuff, but it’s a constant frustration that I can’t be out there making more of a difference. I now have to manage my fatigue and only have a few hours a day when I can actually do anything.

So here I am now, living alone with my cat, and struggling on. I never thought life could be this hard. I am in constant neuropathic pain in my legs (imagine you’ve put your legs up to the thighs in boiling hot water – that’s how it feels, all of the time) and sometimes my feet. I get occasional buzzing sensations in my legs. I can’t walk, and I can’t really feel anything from the hips down. I have limited manual dexterity, and I also have nystagmus so my vision is totally ruined. MS has taken a lot from me. I am trying to make the best of my life as it is, and move forward, but it’s so hard not to think about what might have been. If there’s any Discworld fans out there, you’ll get what I mean when I say I feel like I ended up in the wrong leg of the Trousers of Time. I listened to someone on a podcast once (it was Claire Lomas MBE) who was saying that acquired disability is a lot different to congenital disability – if you are born with something you don’t know any different, but if you get something later in life it’s a massive adjustment. When I look back at my life before MS, it’s hard to believe that I was that person. I went to festivals, raves, I was a DJ in clubs. It’s hard to imagine now. I look back at old photos and I can’t believe I did all that stuff. I am grateful that I got to do those things before I ended up how I am now.

So here I am, 12 years in, and it’s been quite a ride. Can I get off now? That’s a joke. I will never be able to get off this ride and I just have to move forwards from here. Every single day is a struggle and being alone makes it even worse. I often speculate on what it would have been like to have someone on my team. But it never happened so I just have to get on as best I can.

And so, we progress. I am now secondary progressive so it’s just downhill from here. I’m constantly fighting against the tide. MS is taking me down. Imagine that your body is a complete jigsaw puzzle. When you have MS, pieces just fall away and get lost. It erodes you, bit by bit.

So, I’m going to start writing about my life. I don’t think anyone really knows what it’s like and what is happening to me. You can choose to read it, or not, but this is my reality and it’s not easy.

Onwards and upwards eh!

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This mainly reiterates the homepage…

Hello! I’m starting a new blog because it has become obvious recently that people really don’t know what I go through every day. I want to detail the truth of what I go through on a daily basis, what I have to live with, but I also want to talk about my achievements and I want to give hope to people who are newly diagnosed.

I got diagnosed with multiple sclerosis  (MS) in 2014, and started off relapsing-remitting. Now, after twelve years, I’m in the secondary progressive stage of MS. Life is a bit more limited now as I’m in a wheelchair and am managing fatigue but I also want to talk about my positives.

Last year I finally finished my degree with a 1st… I’ll write separately about that journey! It’s been a long one.

I’m working hard on self-improvement from now on; I’ve had a long battle with my mental health and it’s been hard to stay afloat. It’s ongoing work and it’s hard but I have to keep at it. After months of being in the doldrums I feel like things are starting to look up. It’s all gone to pot so I feel like I’m starting from ground zero, but you have to start somewhere, right! Every journey starts with a single step. I am 41 now and I can’t let my life be over. It would be so easy to give up and let everything deteriorate, but i mean to fight on and do the best I can. So watch this space people. I am going to be candid and really lay it out. It may not be easy reading and some of you might think some things gross but this is my reality, and if people don’t know what is really going on they can’t act accordingly.

I’m aiming for a post a week, maybe two. I can’t make promises but I’ll try. I’ll reference interesting science papers and talk about things that have helped me improve. Please subscribe to get notified of new posts, and share with anyone that might get some value from it.

Thanks all, and I look forward to sharing my journey with you.

With love from the Tingly Badger

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PS… This site is a work in progress so it’s going to grow over time. Keep your eyes peeled!