The real cost of multiple sclerosis goes far deeper than anyone can ever imagine, this post will show just how deep!
**Trigger Warnings** – There is mention of mental health issues and bodily fluids within this post.
No longer able to work
Working had been a large part of my life having worked from being 15 years old, without giving you my CV I have had a very varied work life which at times was challenging.
Though, I am pleased to say that along the way I picked up many friends, some of which I am still in touch with today.
Working gave me one of the most solid purposes I ever had in my life, I loved being around people, I loved to achieve goals. I loved being a boss and having a team of people working with me as much as I did working on my own autonomously.
If you have followed me for a while you will know I have made no secret of the fact I miss working and the people I worked with, and it still irks me that I got to a stage in my career when everything was finally coming together, I loved my job and finally, I was beginning to feel appreciated and I was good at what I did.
Prior to becoming ill, I earned a decent salary with a company car and even though I probably lived from paycheck to paycheck if I wanted to go on holiday it would only take a couple of months to get the money together.
I didn’t have to think about going out, be it for a meal or many of the events that revolved around following Hull FC.
Whether it be an away trip to France or a ladies night for one of the players who had been awarded a testimonial I was there.
Money really wasn’t an issue, that was until multiple sclerosis became the deciding factor over whether I could continue to work or not.
Fast forward to 2020 and I now live on benefits, universal credit, ESA and PIP so there isn’t really an option to even save for these things anymore
Last year someone made a comment about, how I could afford to go to a rugby dinner which was £60 and my response was because I don’t do anything else much now and they only come up every 3 or 4 months.
Plus multiple sclerosis doesn’t like me drinking so what could easily turn into £100 day out isn’t much more than the price of the ticket.
Then there are the times I do plan to go places and can’t go, one example is The Curve Fashion Festival in November last year and another is a couple of weeks ago when after purchasing my ticket I couldn’t attend Thrive in Doncaster because I wasn’t well enough to travel.
Therefore, not only am I having to save to go to these events I very often also lose any money that I have already spent.
Fear of missing out, my friend Jenny has written a post about this and yes I do suffer from this, but not from the point of view that I am jealous of others because a lot of the time I have been invited I just can’t go.
My heart still skips a beat when I think about swimming and the aqua aerobics I used to enjoy every week, I could actually cry at the thought of never doing it again.My heart still skips a beat when I think about swimming and the aqua aerobics I used to enjoy every week, I could actually cry at the thought of never doing it again. Click To Tweet
Swimming and aqua aerobics was my stress-buster when I was feeling, down, anxious and things were getting on top of me, the relief I got just from swimming a few lengths or kicking my legs and waving my arms about in water can’t be replaced.
Every time I left the gym I felt so much better in myself and ready to face the world again.
Many people have suggested how good it would be for me to do now, but then don’t understand when I explain, it’s not even the swimming it’s the effort it would take me to get changed and dressed again afterwards.
The shower alone would take my fatigue levels through the roof without having to try and get dried and dressed again.
At home, I sit on a chair to wash and I then put a towelling robe on to dry off, then I sit for probably an hour before I can start to get dressed.Getting dressed mostly takes place with the aid of my bed, I can't put trousers, pants or tights on without being sat down as my balance will go and I will fall over. Click To Tweet
Getting dressed mostly takes place with the aid of my bed, I can’t put trousers, pants or tights on without being sat down as my balance will go and I will fall over.
To add to that 70 lengths in a swimming pool or an hours aqua aerobics hopefully you are starting to understand that the comment of “swimming will do you good” is a little infuriating.
Blogger events is another as they are often held in old buildings and the access is just not available to me, I am not good with stairs so add to that a winding staircase and there is no chance I would commit myself to either walking up or down them.
But what I miss the most are those spontaneous times when I would throw some makeup on and in 10 minutes be in a taxi for an afternoon of drinking cocktails and eating out because if I want to go out now it’s like a military exercise which can take all day to prepare for.
So that’s my FOMO because I do feel I am missing out but can’t do anything about it.
Due to me being unable to use a standard cooker because I can’t bend down to get food out of it, I tend to eat ready meals and food that can be cooked in my air fryer, also if my energy is really low I will order a takeaway or eat out.
**TW** Call me Tena Lady, I remember when I used to joke about Tena lady’s if I had laughed too hard etc., but now one of the symptoms of MS is the nerves in your urethra stop working properly and you end up with an urgency and when you can’t access a toilet it starts to come out in drips, then ironically when you do get to a toilet you then have to squeeze it out.
The same happens for bowel movements as the nerves don’t talk to each other between the sphincter and the rectum meaning you can push but nothing happens and then when it does it goes the other way and you can’t stop it.
Wheelchair and Accessories
Since becoming disabled I have bought, 2 x mobility scooters, a transit wheelchair, a walker, various different walking sticks and Speedy IGO – I did have a £200 contribution to the Speedy IGO but had to find the other £1200 myself.
None of these items come cheap the total for mobility scooters is £750, the transit wheelchair cost me £125, the walker £100 “which sadly wasn’t suitable” and walking sticks that range from £40 to £10.
Then there is a wheelchair cosy because have you sat in a wheelchair for any length of time when it’s cold? A wheelchair waterproof, which came in handy at Bolton last year, cup holders and a bag for the back.
I am very sad to say that the couple who I took on to assist me with this after an original quote ended up completely having my pants down, I was given a cost to pack and move, yet every time they came to pack or move something I was light by over £100, which when I think about it makes their £185 quote come to around a total of £1400.
They also took anything that was to go charity, £100’s worth of clothes, books, CD’s DVD’s and many items that wouldn’t fit into my bungalow, I didn’t think about it at the time as they seemed so helpful.
Not long after I moved in they disappeared off the face of the earth along with my appliances that they had been storing to sell.
Moving from a 3 bedroom house to a 1 bedroom bungalow meant none of my own white goods would fit in, which left me having to purchase all again.
Never did I think this would become part of the symptoms of multiple sclerosis but having looked after my teeth for years I always had problems with nerve issues and abscesses which resulted in me having many teeth removed.
There isn’t any concrete evidence that this is caused by multiple sclerosis, however, if you think about the nerve problems with my bowel and bladder you can assume that the nerve problems could well have been in my mouth too.
This is a whole new blog post as some of you will probably know that I had all of my teeth removed over six months in 2019 and was fitted with dentures in July 2019, which I paid for.
Now looking at the before and after photos below you could be forgiven for thinking my own teeth didn’t look too bad, no they didn’t but I had hardly any at the back which meant my bite was out and eating was very uncomfortable for me.
I truly didn’t take this decision lightly and had amazing support from all of the staff at Wansbeck Dental who I honestly can’t recommend enough.
Now I am at the stage of needing permanent dentures because my gums have now shrunk making my temporary ones very lose.
But, I just couldn’t afford to pay for my permanent dentures so I decided to try an NHS dentist and they just don’t fit, but then I am told they will bed in.
They won’t they are too painful, and after taking the advice of the dentist on the colour I don’t like them, so, for now, I will keep going with my temporary ones until I can find the funds to purchase permanents. Still no steak for me!
Sadly I can count on not much more than one hand now the friends that I can truly rely on, the ones that I know I could pick up the phone and know they would be with me in a shot.
I don’t blame others anymore as I can see an unconscious bias from the comments of I should do more, to I should eat better and the best of the lot, “I will start to depend on my wheelchair if I continue to use it” as well as a situation they don’t know how to handle, so it’s easier to not be around me.
**TW** I listened to a podcast this week about an amazing young man called Jansin Turgut who has admitted to trying to end his life by jumping off a car park in Ibiza in the summer of 2019.
One of the things he said was he has found out who his friends are and they are not the ones he has had by his side since childhood they are the ones that he least expected to support him.
“Just because you have been friends for years, you have common interests, doesn’t mean to say you are friends”
This resonates with me so much, because the ones that stood up when I nearly lost Mum over Christmas are the ones that I know I can always rely on.
The real cost of multiple sclerosis is far greater than anyone could ever imagine, as you can see it’s taken so much from me and still keeps taking!
However, it has also provided me with an opportunity to do something I would never have thought possible and be an advocate for multiple sclerosis and chronic illness along with creating awareness around accessibility and the issues I face.
My only hope is everything that I share with you goes some way to helping those with multiple sclerosis know they are not alone along with disabled people having access to information on the accessibility on the places I have visited.
While also sharing plus size fashion and beauty to show #IAmIllNotUgly!