The Power of Oxygen
In 2010 I was diagnosed with the Relapsing Remitting form of Multiple Sclerosis¹ or MS for short. I soon found out my MS is highly active and ended up having to have steroids after steroids to reduce inflammation.
My mobility had deteriorated within months of my diagnosis, first I started to use crutches, and by March 2011, I was having to use a wheelchair when out shopping.
Within 18 months of being diagnosed with Relapsing Remitting MS it had developed into Secondary Progressive² but I was still having relapses.
It became clear that the medication I was on to reduce my relapses wasn't working as well as expected. So my neurologist decided that I should be on the most effective medication for my highly active MS - Tysabri³ (natalizumab)
So now for the last 4½ years, every 28 days, I go to the hospital to have infusions of this medication - Tysabri. Not long after starting Tysabri it was also confirmed that I have another long-term chronic illness called Fibromyalgia⁴ The good news is, the Tysabri is doing its job! I haven't had a major relapse since starting it, which is fantastic because, before taking it I was relapsing every month!
Whilst the Tysabri is working, I still need my daily medication to help with my MS symptoms, which include chronic pain*¹ & chronic fatigue.*²
Yes, the daily medication helps but nothing works completely. I have daily struggles with pain and more lately my MS fatigue has become intolerable, even with the medication I take for it!
When I was first diagnosed with MS, I was told about a local MS therapy centre*³ Here they have all sorts of treatments to help with different aspects of MS, in particular I was interested in the ‘Hyperbaric Oxygen Therapy’*⁴ (HBO)
I visited the centre back in 2010 & although everyone there was lovely, I just didn't feel it was for me at the time. If I'm honest and without meaning to sound rude, the whole experience terrified me! I wasn't ready to accept my MS!
Even though everyone's MS is different, when you're first diagnosed, you think everyone with MS follows the same path.
It's often related to as 'the wheelchair disease' because, the truth of it is, nearly everyone does end up in a wheelchair as the disease progresses. I didn't need any walking aid when I was first diagnosed and it was the last thing I had thought about, so going to somewhere like this centre, where so many people with MS of different levels attend, you can imagine what went through my mind when I saw people in wheelchairs, people with walking frames, walking sticks, motorised wheelchairs, etc. I think I must have gone on the busiest day & I was terrified!
Whilst I was there, a lovely volunteer spoke to me about the ‘Hyperbaric Oxygen Therapy’ and I was allowed to go into the chambers they use for it. Because it is a metal compression chamber, a lot of people can become quite claustrophobic inside, so it is best to make sure you will be confident whilst inside before trying it!
I came away with lots of information about all the different treatments the centre offered, but also in the back of my mind, knowing that none of it was for me at that time! I just couldn't face it! I wanted to ignore it, forget about it & hope it would go away! That's the thing with MS, it doesn't go away!
Since visiting the centre in 2010, I have had to finish working due to the everyday stress of working.
Those things I used to take for granted like, getting up in time, getting ready, getting to place of work whilst stressing about time to get there, traffic etc, and that's before I even started my work hours! It was far too much for my MS fatigue and stress levels, of which both can contribute to relapsing, and most certainly do for me!
So now my days consist of getting up early, snoozing on the sofa, helping out different MS charities in the form of blogs, fundraising events and creating different pieces of my own art work that I donate to different MS Charities to be auctioned off, raising money for the incredible causes!
Depression is also a major part of my MS, I take medication for this, which was a huge decision for me to make and also a massive turning point in the acceptance if my MS.
I also found, a great way to keep my mind healthy is with exercise. I used to be a lover of walking, before pain in my back, hips and legs from my MS meant I could no longer follow that love.
I lost the enthusiasm to exercise because I didn't think it was a possibility. In 2012 when the Olympics came to GB, I was made aware of a Paralympian swimmer, Stephanie Millward, who, like me, also has MS!
This opened a whole new chapter in my life, as I realised that, actually, it is possible to exercise and have MS!
In 2013, with my very good friend's encouragement, I went along to Aquafit with her and found through this exercise I gained strength again in my stomach, back and legs! Enough to be able me to walk with one walking stick instead of 2 crutches! In 2014 with a GP referral to my local gym, I started using all the different equipment within the gym, with the advice of the personal trainer I was referred to. Then when I’d been going for a while, I eventually got the confidence to attend a Pilates class.
My love of exercise, particularly Pilates, had began. A journey I would never want to stop!
I also like to support all my friends in any way possible, just them knowing I am at the end of a phone or text message, should they ever need advice or just a friendly voice.
MS can be terribly lonely, so to know you have a network of MS friends, who ‘get’ what you're going through, just a phone call away, really is like a life support!
Just recently, my MS fatigue has become so chronic, that it is becoming near to impossible, to function at a level where I used to be able to take part in Pilates classes . It's with this form of exercise, Pilates especially, that helps to keep me mobile, motivated and positive. Then with all of those tools, I am able to manage my chronic pain better.
At the beginning of June 2017, I remembered about the MS Therapy Centre, especially the Oxygen Therapy they offered there as it was said to be good for fatigue! I phoned the centre to get more information. I found out the cost of the sessions are £16 + £1 for hire of a mask. The first time using oxygen therapy, you have to book a trial session, this is to make sure you get on ok with it.
After then, people that have MS are recommended to start with an intensive course. 16 sessions within 5 weeks! I was really keen to try it & yet felt so deflated when I finished the telephone call. I hadn't expected to have to spend so much initially!
Because of the cost, I couldn't do it straight away! I would have to save up, putting the £17 aside each week until I had enough to start!
It was then that my Dad suggested trying to raise the money with a 'Go fund me' page!
What a wonderful idea, but was it being to cheeky? Was I to proud to ask strangers, friends, family for money to do this? After plenty of thinking time (about a day!) I made the decision to do the fundraising page! Then my Brother stepped in! He told me, he had money saved that he wanted me to have! Enough to get me started with my intensive sessions! I couldn't believe my luck! What an incredible guy my Brother is! Then when I told my Chiropodist about the idea, she also donated the full cost of the treatment I was having that day! Absolutely incredible! I had nearly all the money I needed for the intensive course!
I didn't delay and booked my trial session for the following week!
My first full session was on 20th June 2017! I'm getting on really well with it and now after my 12th session, I can notice the difference!
I do find it incredibly tiring driving myself there and back 2, 3 or 4 times a week. But I feel sure that continuing this on a weekly basis, will bring me some relief from my crippling fatigue! If only enough to be able to better cope with my pain, I'll be over the moon!
* Now, this is the important part... I need my own mask! I know its only £1 to hire them there, but I feel that I would benefit from having my own mask immensely!
The masks have to be fitted perfectly so no air escapes. Because the size of the masks have to be adjusted every time someone uses it, I have found that we either get mine too tight, or too lose!
If I had my own mask, it would always be set at my measurements! Ensuring that I would have the exact fit every time I had Oxygen therapy, and no air would escape!
I believe the masks to be around £100 so if you could spare just a small amount to go towards this cost, I would be eternally grateful!
Thank you for taking the time to read this, and if u have donated, thank you so much! Vix
Informative websites;
¹ www.nhs.uk/Conditions/Multiple-sclerosis/Pages/Introduction.aspx
² www.mstrust.org.uk/a-z/types-ms#spms
³ www.tysabri.com/
⁴ www.nhs.uk/Conditions/Fibromyalgia/Pages/Introduction.aspx
*¹ www.mstrust.org.uk/a-z/pain
*² www.mstrust.org.uk/a-z/fatigue
*³ www.merciamstherapy.org.uk/
*⁴ www.merciamstherapy.org.uk/therapies/hyperbaric-oxygen-therapy/
