Georgina Colman, 49, from Basingstoke in Hampshire, was diagnosed with multiple sclerosis (MS) at the age of 26 and has difficulties walking.
She receives personal independence payments (PIP), which is the main disability benefit and is paid to people with a long-term physical or mental health condition. She also has ADHD.
In The i Paper, she shares a seven-day diary of her life as she battles the cost of living crisis and health issues, from perimenopausal symptoms and reduced mobility to swollen feet and ingrown toenails.
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Wednesday
I got up at about 6.30am. It takes me quite a while to get ready in the mornings, because my body doesn’t work like an able-bodied person’s. I have to physically lift up my feet to put my socks on. It probably takes me about 45 minutes all told, as my muscles are really stiff, especially first thing. After I’ve done that, I normally go downstairs and have my breakfast.
I did a bit of work before I went off to my neurophysio appointment. I go twice a month at £125 an hour. It’s going up to £130 in April. That’s a big chunk of my PIP payment. I get standard daily living and enhanced mobility, which gives me about £700 a month.
My neurophysio worked on manipulating muscles in my leg and my hand because my MS affects my movement. We did cycling exercises, both seated and standing, to help with my mobility and my strength. If I could afford to go every week, I would but financially, that just isn’t possible right now.
Something interesting about MS is how much the symptoms fluctuate. It can change from one day to the next, or one week to the next, which makes it really frustrating.
In terms of work today, I wrote an article for my website, Purpl, which is a money-saving platform for people with disabilities and long-term health conditions. I also organised a “let’s talk” session with a disabled influencer who has endometriosis.
Georgina runs a money-saving platform for people with disabilities and long-term health conditions
In the evening, I helped my husband make dinner. He did a lot of the heavy lifting, as I can’t lift plates and so on, which is really challenging.
I eat a very clean diet because of my health conditions, so I avoid gluten, dairy, and processed foods – that makes food quite expensive. For example, we buy grass-fed organic meat and we had mince tonight. That’s about £7.45 for 500g compared to about £5 for a standard packet.
When you buy a lot of meat as we do, it’s quite an expense. But it’s really important for my body and helps to keep the inflammation low.
Later on, I gave my calves and feet a good massage. The machine I use for this does both calves at once and then it turns around and does your feet. It cost me about £270.
Thursday
I got my hair dyed because I had a lot of greys coming through and colouring it is not something I can do myself. My hair is very thick and there’s lots of it. I have a bit of a wonky right hand that doesn’t work so well anymore, so I go to the hairdresser’s every six to eight weeks.
Then I came home and did some work. This evening, I’m wearing my Mollii Suit. I’ve had it for about four years now and it was originally designed for people with cerebral palsy. It has electrodes inside, up the arms, down parts of the back, on the legs as well and it’s programmed via the rehabilitation place where I went for my neurophysio yesterday.
They programme it to work with your body. It’s about turning the right muscles on and turning the other muscles off because quite often you have one fighting against the other when you have spasticity within your body.
I did some core strengthening exercises earlier whilst wearing my Mollii Suit and I will do some more stretches before I go to bed.
‘MS symptoms can change from one day to the next, one week to the next, and that makes it really frustrating’, says Georgina
When I first got the suit, I used it every other day for an hour and I also went to hydrotherapy because I had more time available then and it really helped. It still helps me but because I’m so busy with work, I don’t always remember to wear it every other day.
When you first get it, you wear it for about an hour every day for two weeks. It was about £5,500, which is a lot of money.
At the rehabilitation centre, they have lots of different assistive technologies. I’m hoping to trial the exo skeleton later this year, which looks really fantastic and has helped people be able to walk with assistance which would be amazing. We’re living in an era when there are so many amazing technologies being developed but the prices are often too expensive for people to manage. Cost is such a barrier.
Friday
This morning, I did a personal training session with my friend who’s a personal trainer. It costs £35 an hour. She comes to my house twice a week and we spend an hour doing functional exercise. With MS, it’s really important to keep your body moving.
We used my BlazePods this morning. They are something that my neurophysio introduced me to. They are pods that flash different colours. You can do different settings and it just makes the exercise more fun. It’s really good with my ADHD brain because it ties into my competitiveness and also gives me a focus, so that I’m not thinking about how well I’m standing and therefore I’m often more stable when I’m doing the exercise.
Today was quite frustrating because I couldn’t do my sit-to-stands. I tried multiple times but I couldn’t get up. I could do it a week ago but not today.
The BlazePods were quite expensive. They were about £500 altogether but they’re so worth it. I use them a lot. The rest of my day was pretty busy with work. We were putting together a press release about the cost of disabled products and how they’ve been going up.
Georgina sees a personal trainer twice a week for help with functional strength exercises at a cost of £35 a session
I looked back at something that I’d purchased back in 2017 – my first manual fold-up wheelchair, which cost me just under £100 and lasted about four or five years. In 2023, I had to replace it and it was about £150. Today, I looked up the price of the same wheelchair. They’re now £170.
That’s the problem with some of the equipment out there for disabled people. Sellers have got that small market where they can put the price up and there’s not much that my community can do. Contrary to popular belief, we don’t get things from the NHS.
This evening, we played a game of Scrabble because it’s a great way of relaxing my brain after a really busy work day. I often hyperfocus on things and it means a few hours go by before I remember to stand up and move my body, which is not great for my health.
Saturday
This morning, I used my bike for about half an hour. Later, we went to the foot clinic. It costs £50. Because my wonky walking puts pressure on different parts of my feet, I quite often get an ingrown toenail on my right foot, so I have to go to the clinic every four weeks to have it cut down so that it doesn’t push against the skin and cause pain.
I also get very swollen feet. I’ve got terrible circulation so I get cold feet constantly and chilblains. My husband says I’ve got troll feet – which is very unkind because they’re not that bad! But it is frustrating when they swell up.
I can live with not being able to walk independently but having feet that swell up is really miserable because it really impacts the shoes I can wear. In the summer, they just get funny-coloured as well. I used to love wearing all my different types of shoes and boots. Not being able to wear them and having to wear ugly shoes sometimes because I can’t find shoes that work for me is just frustrating.
‘Everything is a challenge and takes longer to organise. You can’t just go out the front door and go for a dog walk’, says Georgina
Back at home, I did some Lego in the afternoon, which I love. It’s also good for working on my right hand and I also do a lot of massage for my hands using these pretty cool finger things that sit on them. I don’t wear them when I do Lego, but I try to use my hands as much as I can.
My husband and I played some Scrabble and watched some TV. We’re big board game lovers as well as Lego lovers, because we don’t go out as much. It’s not so easy for me to get out, especially when it’s cold and miserable. This evening, we’re going to chill out with dinner and watch one of the series that we love on TV.
Everything takes me so long to do. I always feel guilty that I can’t do as much to help in the house as I used to. There are moments when I have much more energy, and then I can do a bit more, but I feel bad that my husband has to end up doing a lot more.
Everything is a challenge and takes longer to organise. You can’t just go out the front door and go for a dog walk. It takes me ages to get my coat on and my bladder is weak so I have to go to the toilet first, and then it takes me ages to get my shoes on. But what can you do? You have to just get on with it.
My first manual fold-up wheelchair cost me just under £100 in 2017 and lasted about five years. In 2023, it was £150. They’re now £170.
Sunday
We went out and did some errands today – just had to go to a couple of shops – and then we came back and took the dog for a walk. I used my electric wheelchair so that my husband didn’t have to push me. He’s got arthritis in his hands.
It’s much better when I can go out with my powered wheelchair, which was £2,000. It does mean that when I go to a shop, I can move around and look at things on my own without having to wait for someone to push me.
I always feel really nervous when we come to a curb because I feel like I’m going to fall out. I don’t know whether that feeling will go away over time. I’ve not used it that much yet but I don’t like that feeling at all.
This afternoon, we chilled out and watched some TV, then later on, my in-laws came round, and we had dinner and played some card games.
Monday
I had my personal training session this morning and we used the BlazePods.
It’s been a really busy work day and also a real brainfog day. I struggled with tiredness and a headache, which I think is related to my hormone replacement therapy. I went on hormone replacement therapy (HRT) last summer and it was up and down. I had some really good moments and then some moments of pure exhaustion where just even getting out of bed was hard work.
Georgina’s electric wheelchair means she doesn’t have to rely on her husband to push her
I decided to see an HRT specialist and had a blood test in January. It turns out that my estrogen levels were really, really low and that I’ve probably been in perimenopause for a lot longer than I thought.
There’s so much we don’t know about women’s health and the connections between everything but I do believe there’s a really strong link between ADHD and autoimmune diseases.
I don’t like taking medications but the difference when I first started the honeymoon period of HRT was unbelievable. My body just felt so much better. My walking is still awful but half the battle is that it requires so much energy for me to move my body, and therefore, I get tired more quickly.
Now we’ve just got to try and find that right balance. I’ve got another blood test in a couple of weeks because my doctor believes that my estrogen is still too low and some people just need a much higher level to get where they need to be.
There are people within my community who have to choose between eating and their electricity bill. It shouldn’t be like that, but that’s the reality.
Tuesday
Today hasn’t been very exciting, so I thought I would just reflect on my disabled life.
I got diagnosed with MS when I was 26, a couple of months after my son was born, and then my walking went downhill when I was 40.
Since then, I’ve learned how challenging life can be when you’re disabled. One of the key things is the cost of living with a disability and how expensive it is. You don’t get much from the NHS. They do give you things like physiotherapy but there’s a long waiting list.
For many people with a long-term disability, that ongoing help with things like physio, acupuncture or hydrotherapy is really helpful and beneficial to keep their body moving, and that will cost money. There are people within my community who have to choose between eating and their electricity bill. It shouldn’t be like that, but that’s the reality.
The highest amount of PIP you can get each month is about £750 or £800, yet costs can be way higher. Scope, a charity that supports people with disabilities, puts the average at £1,095 a month.
I do all these things, like physio and personal training, to help my mobility so that I don’t rely on the NHS.
Some people just think that disabled people on benefits are lazy and that we don’t work. That really isn’t true.
Disabled people get a lot of abuse online. It’s really unfair. Until you’ve walked in someone else’s shoes or you’ve got a loved one who is disabled, you don’t really understand the realities of the situation.