The MS blind spot

I’ve been thinking about this for a while; years really. More so now that my life is so empty and I’ve got a lot of time on my hands to do nothing but think.

It’s really bizarre to me, but very few people actually acknowledge my condition. Nobody really asks me about my disease. Nobody asks me how I actually am. It’s like the elephant in the room. People can see I’m struggling, but I feel that acknowledging it would mean they have to accept it and do something about it. Some of my oldest friends shy away from it. It’s a massive part of my life, and having it ignored makes me feel unseen.

I don’t know if it’s because these people knew me when I was able-bodied, and watching me deteriorate is really hard for them. I have to live it, every day, and yet people can’t suck it up enough to find time for me and make life a little bit more bearable. I seem to get more acceptance from people that have only known me as I am now. They don’t know me as anybody else.

I would love for people to tell me what it’s been like for them, seeing their friend go from being the vibrant, outgoing, festival and night out loving DJ to a person basically housebound and totally ruined by MS.

I just can’t imagine what it must feel like to see someone deteriorate and struggle. If it wasn’t me, and it happened to one of them, how would I feel? How would I react? I know my mum finds it really hard to see me in this state. Nobody wants to see their child go through what I’m going through. It’s easier for a lot of people to just pretend it isn’t happening. It obviously is. I’m in a wheelchair. I am in constant neuropathic pain, I have a permanent catheter because I can’t pee, my bowels don’t move, I can’t see properly anymore, and I generally feel like my body is shutting down. And yet nobody asks me about it. Maybe it’s just too big. And as they say, ‘denial is not just a river in Egypt’ (just my little joke).

I’ve got a good friend whose brother died with MS. At the end, he was in a care home, and my friend bumped into his best man. Her brother had got married way before MS and the best man was his best friend. When Pete got to the point where he needed to be in a home, his best man never visited him. When my friend bumped into said best man, and asked him why he never visited Pete, he said that he couldn’t bear to see his friend like that and felt bad that he got to live a life and Pete didn’t.

Maybe that’s it… Survivor’s guilt.

However, for me, having company from old friends and actually being asked what’s happened is so important. I feel totally unseen and totally irrelevant. MS is a huge part of my life and although I said in the past that I’d never let it define me, it is now so entwined with my day-to-day life that I fear that it does. I don’t get time to invest in my interests, because I’m too busy battling with fatigue, or I didn’t sleep well because I woke up in screaming agony, or some other drama has derailed my day. It’s just relentless. I don’t get a day off and I don’t get a break. I don’t really know who I am anymore. I love science, I know a lot about the environment, I’m really good at maths and a lot of other things, I’m articulate, and I’m not looking too dusty for someone in their 40s but… But. I feel like it’s all a big waste now. I push people away for a number of reasons and when I do see people I have to try and be the person they want me to be, not who I really am, because I feel like people just don’t want to know. I feel so unseen. I don’t think people want to hear the reality. When people say, ‘how are you?’ they just want to hear ‘I’m ok’. They don’t want to hear that I haven’t left the house for a week, I spent the night on the floor because I couldn’t get up, or I’ve spent another day feeling rubbish because I can’t accept my life. But then what is the point of telling them? What can they do about it? Nothing. So I guess it’s just up to me to deal with it and endure it and that’s just life.

So as a result, I keep it all in, and pretend everything’s fine. It eats me up inside. I try and try to stay positive, but I feel like I’m constantly struggling to just keep my head above water. The MS blind spot really doesn’t help. This is my reality. I also know that people don’t come to me with their problems because in their heads, mine are so much worse. I feel totally shut out, but on the other hand it is painful to hear about ‘life outside’. I would dearly love to have the sort of life drama which involved my van breaking down on the motorway (this has actually happened to me in Spain, but that’s another story) or some other such thing, but it’ll never happen now. I’m good in a crisis and have always kept a clear head, and now my crises involve such questions as ‘how am I going to get off the floor?’ ‘who can I call to help me at this point?’ etc etc.

Am I just making it worse for myself by keeping it all in? I have had years of experience of the MS blind spot and I guess I’ve just learnt that people don’t want to hear it, so I don’t say it. How would you even respond? I don’t complain (much) and I just get on with it. C’est la vie!

Today I Learned

I thought I’d release this every Sunday night. I listen to podcasts every day and don’t want to bombard you with posts every day so I’ll do a weekly post. I get all my podcasts from the Podcast Player app, which I find an easy interface to use, and you can search for podcasts. So for example, I typed in ‘environment’ and found loads that I wouldn’t have come across otherwise! I also use the Global Player app, and BBC Sounds. I will be forever grateful that being housebound and unable to work gives me time to listen to stuff and read articles.

This week in podcasts (read on for what I’ve been watching and reading)…

Monday

The News Agents

It’s my daily dose of current affairs. It’s hosted by Emily Maitless (you might remember her from her from her interview with the then Prince Andrew on Newsnight in 2019… You can watch it here – it’s disgusting how easily he lies), Jon Sopel and Lewis Goodall. All excellent journalists and every weekday they drop a new episode.

Tuesday

The News Agents

Wednesday

The News Agents

The Rest Is Science – I love this podcast. Professor Hannah Fry and Michael Stevens (you can watch his YouTube channel here) geeking out on science and maths. It’s right up my street. I just love hearing people talk about these things and I love a new thing to learn – every day’s a school day! I don’t listen to them when they come out but then get a few episodes to catch up on.

Thursday

The News Agents

The Rest Is Politics – I love this podcast. Alistair Campbell and Rory Stewart talk global issues. Politics, nature, and history, and everything in between. They do two episodes a week.

Friday

The News Agents – I really loved this interview. Natalie Fleet MP is just an amazing person.

The Rest Is Politics – Alistair is talking to someone about the Antarctic, and how now the ice is melting there’s a lot of land grab going on. It’s so sad that a massive climate emergency is happening and all people can think about is money.

What I’ve been watching

I love a bit of history, and have been watching a Titanic series on BBC iPlayer. I can’t imagine how terrifying it would have been.

On YouTube I watched The Entire History of London which was 30 minutes of London. It was really good. I’m waiting for one to come out about Bristol, where I lived for 13 years. It was built on slavery. I loved the city vibes and lived there for most of my 20s, when I was fit and able. I had the best years of my life there. So many experiences; so many good people.

I really enjoyed Guy Martin’s House Without Bills on Channel 4. Passive houses have got to be the way forward. We need to look forwards – children will grow up in the world we leave them. Climate change is real and it’s happening now. You can see it for yourself. It’s been raining here for what seems like months. For every 1°C that the Earth warms, the atmosphere holds 7% more water, so there’s going to be more rainfall. Anything we can do to reduce the impact is a win in my eyes.

I also watched The Night Manager on BBC iPlayer which was really good. If you like a spy drama then this is for you! Would highly recommend.

I enjoyed Safe on Netflix. I love a good plot twist and there’s plenty in there.

I’m also watching Our Oceans on Netflix which is narrated by Barack Obama, and honestly I could listen to that man talk all day.

Sustainable choices

I’m writing this post because someone said to me that they genuinely don’t know where to look, or what to look for, regarding sustainable alternatives to normal supermarket buys.

I always look for the sustainable alternative, which takes some hunting down on the internet, but the algorithms on social media give me adverts for things that I might like so it gets easier! However, many people don’t have the time to look around for other things. I have also been doing this for many years and have tried and tested many brands to find what I consider are the best and cheapest options. This is just my opinion and I’m in no way affiliated with any of these brands. It’s what I use, and I’m sure there’s other options out there, so I’ll update if I change my ways or buy something different.

I should start by saying that I hate plastic waste. I know it’s completely unavoidable in our society, but I do try and reduce it as much as possible. I learnt so much about the environmental impacts of plastic waste and I’ve since learned that people don’t know / don’t care / don’t have the time to look into it. Did you know that only 9% of plastic ever produced has been recycled? That’s wild. There are multiple online sources that will back me up, and there’s some interesting reading out there [1][2] (I could go on). So, I do my best to recycle the plastics I can’t avoid (this includes taking my soft plastics to the supermarket) and buying as many products as I can that don’t use plastic in the first place.

So here goes…

Toilet roll and kitchen roll: I buy mine from Naked Paper – it’s unbleached, so it isn’t white, but I did think heavily about bleach going into the water system and the effect it would have on aquatic wildlife and went for unbleached. It comes in a cardboard box and their delivery times are really fast (1-3 working days). No plastic to be seen here! And I’ve never had a problem with the softness or anything.

Laundry capsules: I get mine from Smol, which are great and I also get my kitchen and bathroom spray from there. They do loads of products. The kitchen and bathroom sprays come with an initial plastic bottle which you then refill with water and a tablet, which dissolves and turns it into kitchen spray. So yes, it’s one plastic bottle, but in my mind that’s better than buying one, using it up then buying another one. You keep the same one forever, and then you just buy the tablets. I see that they’re now doing hand wash but I’ve got about 20 bars of soap that people have gifted me to get through first!

Toothpaste: I get toothpaste tablets from Smyle. I get the mint ones and cannot comment on the other flavours because I haven’t tried them. The mint ones are minty fresh. To start with you get a glass bottle to put them in but after that, you get packets of tablets (the packets are paper). You crunch them up in your mouth, wet your toothbrush, then off you go. They don’t foam in your mouth because they don’t contain sodium laurel sulphate which is what they add to shampoo and toothpaste to make it foam up.

Toothbrush heads: I use an electric toothbrush, but I get the heads from Brushd which come with an envelope to send the used ones back in so they can recycle them. They have a lot of sustainable oral care products on their website. I see they do toothpaste tablets but I haven’t tried them.

Washing up sponges: I get these from Amazon. They’re made from plants and last for ages. And when you need a new one, you can put the old one in the food recycling bin. The sponges you get from the supermarket are made from plastic and last for much less time. These are an investment. I bought a box in October and I’ve only used one so far.

Wet wipes: I get these, again from Amazon, which are biodegradable, so I save them up and put them in the food bin. A lot of wet wipes contain plastic so they never break down. I watched this video about ‘wet wipe island’ in London, which comes from people flushing wet wipes down the toilet (remember the three Ps people – the only things you should put in the toilet are pee, poo, and paper), although I did hear that the government are considering banning plastic in wipes because of this issue.

Water filters: I use a  Brita filter kettle, so you put water in the top, it goes through the filter, and you end up with nice-tasting water in your kettle. I got annoyed with the fact that every time the filter was done, you had to replace it with a new one. Then I found Phox, which sends you carbon to refill the filter. You get an initial plastic filter which you then refill when the carbon is used up. Again, no plastic waste as you keep reusing the same one.

Sandwich bags: I get these from Amazon and when they are done, you can put them in the food bin.

Beeswax wraps: I use these instead of cling film, which is a single-use plastic. They are widely available, but I get mine from Etsy. You use them, wipe them clean, and they’re ready to go again. They mould to the container you put them over.

Soap saver: I use soap instead of hand wash, and you know those ends you get left with? I put them in a soap saver and use it in the shower. It’s exfoliating and means I don’t have to buy plastic bottles of shower gel.

So that’s all I can think of right now. Like I said, I’m not affiliated with or advertising for these brands. This is just what I use.

And I don’t like giving money to Jeff Bezos but Amazon is easy and cheap. I’m sure there’s other outlets out there.

Go forth and prosper in your quest for plastic reduction!

🦡💚🦡

Earning my degree

I began my degree in Environmental Science when I was 26. I went to grammar school, I did well, but I couldn’t stand the regime so as soon as my GCSEs were done, I left and went to college. I totally screwed up my A Levels (I spent the whole time getting stoned in the park) and came out of college with nothing. Definitely not enough qualifications to get into uni, and anyway I knew at that age that I’d go to uni, waste 3 years, and come out with a degree that I would never use. I had no sense of direction and no plans for the future.

I went straight into work and stayed in Devon. I was just doing poor jobs – I worked in a factory, I worked in a pub. I was going nowhere. All my friends had left Devon and gone to uni. I was just pottering along. Then one of my friends, at uni in Bristol, found me a room, I found a place on an access course (you can do this to get into uni if you haven’t got enough A Levels) and within a week I was gone.

I moved to Bristol with the full intention of completing the course and getting onto a degree. Unfortunately, I spent that year going to college but not really trying, because I met some really lovely people. I went to nights out. I went to free parties. I was so green. You put a 21-year-old in a big city for the first time in their lives and they might go off the rails. I did anyway. I finished that year with a lot of new experiences but, you’ve guessed it, no qualifications. I went into full-time work, first in a call centre and then I got a job in the Department for Work and Pensions. I was still on the phone, issuing Crisis Loans, but I had better pay and better quality of life.

After four years, Crisis Loans got axed, and we were all shipped out to work in Jobcentres. At first, I enjoyed it, but as time went on I couldn’t see it being forever. I was then 25 and finally I’d realised that I had an interest in the environment and I had always loved nature. I had no qualifications and no real knowledge.

So I hatched a plan.

I looked at getting a degree through other methods. I liked work and didn’t want to go to uni. I looked at the Open University, and saw I could get a degree in Environmental Science online, with no prior qualifications, around my existing life. I knew it would be hard work but I was ready for the challenge. I wanted to move forwards with my life and do something worthwhile.

My plan was to finish my degree in my early 30s, and see where it led me. I could suck up a job I didn’t like for a few years if the end goal was something better. I knew that office work wasn’t for me. I really wanted to go into conservation and do something for wildlife. However big or small, every little helps, and the more I learned about climate change and the biodiversity crisis in not only the UK but across the world, the more I wanted to do something to help nature.

So I started my degree with a pocket full of hopes and dreams. It was going well and I did the first two modules. With the Open University you have modules in 3 levels, with each module giving you a certain number of credits. You need 360 to get a degree. So I’d completed level 1 and was a few weeks in to my first level 2 module when I got diagnosed. It was all so much; so new. I couldn’t get my head round my condition and I had loads of hospital appointments and stuff was going on and I just couldn’t put my mind to studying. At that point, I decided to give up. I wasn’t far in anyway and I had a lot to be going on with. I was trying to get used to my new life.

So, five years later, and I was still in the same job. My condition was progressing and although my employer was more than accommodating, I was still thinking ‘is this it now?’

I rang the Open University and explained everything. The Student Support team were really helpful and I went back into studying. I knew then that I wouldn’t be able to do the conservation work I always wanted to do. My mobility was getting worse and I knew that being in a wheelchair would not be ideal for working in the field.

I don’t know why I decided to go back. I loved learning about the environment, and science and maths were right up my street. I also felt like I needed something other than MS. I wanted to do something that stretched my brain.

I’m not going to lie, it was hard work. I had some help from some friends who are clever ladies but studying at home really suited me. Because of my illness I had to frequently get up for the toilet or I had to factor in my fatigue so I could play to my strengths and fit it around managing my condition.

Then COVID-19 hit and I had to self-isolate, so I was at home on my own with nothing to do,  except study. In those days I was locked alone in my house so studying gave me a focus.

The Open University was all online anyway and my tutors were great. There were student forums and ways to get in contact with others. I didn’t feel alone.

It got harder as I progressed through the levels but I had enough background knowledge to get through. My condition was getting worse so each time I submitted an assignment, I also sent in a ‘Special Circumstances’ form. I listed all my problems. At the end I was using two laptops – one to read the course material from, and one to dictate my notes into. I couldn’t write at that point. I also had to dictate all my assignments. I got a lot of equipment because I got Disabled Student’s Allowance – I went for an assessment and they provided me with some things. My eyesight was really failing so I had one laptop plugged into a big monitor so I could read my course materials.

It was an arduous task but I got there in the end.

In 2023 I finally finished with a first! It was such hard work. Completing it was bittersweet for me. It was a massive achievement but I knew it would never lead me into the job I initially wanted. I can’t work anymore, but I do know a lot about the environment. I can’t even commit to working from home because I don’t know if it’ll be a good day or a bad one.

So there you have it. I’ve got a lot of brains in a body that doesn’t operate. It is a constant source of frustration. I just want to do something, anything, to help. The climate crisis is real and it’s happening right now. I heard a great quote the other day “One of the penalties of an ecological education is that one lives alone in a world of wounds” and that’s how I feel. I cannot unlearn everything I know. It does frustrate me that people don’t live more sustainably. I could go on for days about it. It’s really easy to make small changes. If everyone just did something small, it would add up to something big. I just do what I can now.

Anyway that’s my journey folks! Ask me anything about the environment and I’m your lady.

🦡💚🦡

12 years ago! My MS journey since then

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!

🦡💚🦡

My first post

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

🦡💚🦡

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