Late updating this but here is my vlog after my 3rd oxygen therapy…
Day three of my intensive course of Hyperbaric oxygen therapy for MS
We had quite an interesting session yesterday. A guy was also having treatment, it was his first full hour. Unfortunately for whatever reason, he wasn’t happy and we had to stop. I say it was interesting because it enabled me to see what happens in this situation, when someone has a anxiety attack. Luckily there was a lady also in the chamber, that had been going for many years. This lovely lady dealt with the situation, she told the member of staff on the outside of the camber (no staff inside) that this gentleman wanted to stop. The oxygen was stopped, the air pressure was normalised, the door was opened and the guy got out. We all decided we were happy to continue with the treatment as we still had 45 mins of oxygen left!
Although I was really tired after the treatment, it was a general tiredness because of the amount of time I had been in the chamber for. My fatigue was no worse than normal (no better either) Knowing the pattern of my fatigue I would have expected for it to be a lot worse. It was such a great feeling, because I was just feeling my normal effects of my MS fatigue at that time of day (the level of my fatigue differs throughout the day!)
I have a good feeling about this! Roll on next week!
MS has changed my life, oddly and yet profoundly for the better.
When I was first diagnosed with Multiple Sclerosis (MS) in 2010 i was shocked and yet relieved to understand what had been happening to me for such a long while. Once i started to come to terms with my diagnosis in 2011 I felt ready to start fundraising. Around the 1st anniversary of my diagnosis, I decided that I wanted to raise money for the MS Trust, the wonderful charity that has helped me during my diagnosis & whom continue to help me every day with my MS.
Of all the things to do walking over fire seemed the most appealing! I told myself that if I could do that then I could cope with & be stronger than my MS!
A fun event
It was one evening last year, when I was with a group of friends that an event called The Color Run was mentioned. One of my friends searched for it on the internet, just from the pictures that I saw, instantly I wanted to participate in such a fun event. The trouble was it was a 5k run, I can’t walk half a kilometre let alone run 5!
What made it even more appealing was that it was coming to Birmingham! Before I knew it I had emailed the company asking if it was suitable for disabled to take part!
It didn’t take long for the company to email me back but whilst I was waiting I carried on looking at ‘the Color Run’ website.
The Color Run™, also known as the Happiest 5k on the Planet, is a unique colour race that celebrates healthiness, happiness, individuality, and giving back to the community. Less about your 10-minute-mile and more about having the time of your life, The Color Run is a five-kilometre, un-timed race in which thousands of participants are doused from head to toe in different colours at each kilometre. The fun continues at the finish line with a gigantic “Color Festival,” using more coloured powder to create happiness and lasting memories, not to mention millions of vivid colour combinations. Trust us, this is the best post-5k party on the planet! With only two rules, the idea is easy to follow:
Wear white at the starting line
Finish plastered in colour
Now the single largest event series on the planet, The Color Run is exploding since our debut event in January of 2012, with 1.5+ million runners in 2013 and over 2 million taking part in 2014.
I knew from reading that how much I wanted to do it now & hoped that the course was wheelchair friendly & someone would be happy to push me when I needed it!
Then I read the next part on the website
“Color Runners” vary in demographics and reasons for running. With no winners or official times, The Color Run caters to anyone – 2 year olds to 80 year olds, first time runners to professional athletes. Some Color Runners participate as a celebration and capstone of their healthy living accomplishments, while others participate for reasons unique to them.
No stopping me
It still didn’t say anything about disabled & wheelchairs. I guessed it was pushchair friendly as no one is going to make a 2 year old walk/run 5k! I opened the email & was so excited to read that YES ‘the Color Run’ is wheelchair friendly!
That was it, no stopping me! I updated my facebook status asking if anyone else fancied the challenge! It wasn’t long until I managed to get a team of 10, including myself looking forward to the big day. I decided this time I wanted to raise money & awareness for MS-UK. A wonderful charity dedicated to giving support and information to anyone affected by MS.
I spoke to my Pilates instructor Kate King (standing to the left of me in the picture above) at ‘The Pingles Leisure Centre’ and told her what I wanted to do. My aim was to walk as much of the Color Run as possible, knowing it wouldn’t be much because of the pain & weakness I have in my legs. I thought that if I could work on my ‘Core muscles’ then hopefully that would help with my balance, always a must when walking! I also needed to strengthen my legs! Kate was up for the challenge!
That was it, that was my new challenge! I upped the amount of Pilates classes I attended and started going into the gym more often too. Gradually my friends joined me in the gym as well. It was fantastic, my moods started to get better, I was feeling much more positive about things and I was smiling a lot more!
I set up 3 different ways for people to sponsor us, the online ‘JustGiving’ page, sponsor forms and by text using ‘JustTextGiving’
We decided on a name for our team, BAM4MSUK. It made sense to us, By Any Means for MS-UK! I told everyone in the group that it didn’t matter how they wanted to take part in the event just as long as they had fun, after all this was to celebrate my 5th anniversary of diagnosis, proving that I am stronger than my MS! I knew I would be walking what I could and in my wheelchair for the rest, there were people who wanted to run and alsopeople who wanted to be part of my support team to help push me!
3 of us in the team were ‘MegaSpecials’ *Amazing people who have MS* this made it even more special for me. I realised how incredibly lucky I am to have such wonderful friends! There were a lot more of my ‘MegaSpecial’ friends that wanted to do it but just couldn’t for one reason or another. I get the feeling that after hearing how much fun we had they’ll be taking part in the next ‘Color Run’ or whatever challenge I decide to arrange.
Gathering the MegaSpecials
It was finally here, the day I had been waiting for! All the arrangements were in place for the team to meet. I was going with my closest friend and chief wheelchair pusher ‘Debbie’
My ‘MegaSpecial Sistahh’ Sare had come down from Doncaster, South Yorkshire with her Son Lewis, who wanted to take part in ‘the Color Run’ to celebrate his 16th birthday.
We were meeting my other ‘MegaSpecial girly’ Angie closer to the event location & then everyone else in the team were meeting us there. As long as the ‘MegaSpecials’ were together I was happy!
This was such a big thing for me! There was going to be thousands of people there! Since having MS I have learnt that the anxiety I have suffered, for such a long time is actually part of my MS! I’m not on my own with this, which is why it was so nice to have other ‘MSrs’ around me, we all ‘get’ each other!
Screaming with excitement!
All the team arrived and we were all ready! Wilma (my wheelchair, yes I’m one of those people! I like to name things) was all ready with the MS-UK t-shirt attached to the back. Everyone in the team had the official ‘Color Run’ t-shirts on as stated in the rules and we all had paint and glitter on our faces supplied by ‘The Color Run’
We all huddled together and said our bit, this mainly consisted of me screaming with excitement and then we made our way to the start!
Remember to breath!
There were so many groups of people, like i said before thousands! My heart started to race, I’d never done anything like this before! I remembered my ‘Pilates breathing’ to help calm me and kept telling myself ‘just breath, just breath!’
We started to move again, not for long! Stop, start, stop, start! When would we really be starting? We realised they were letting groups of people go & then waiting. Finally, we were off! 5k here we come!
And they’re off!
I started off walking with Angie and a member of the support team Sharon who I stuck to like glue, I was still very nervous even though the crowds of people had dispersed into the distance! Sare was in the wheelchair being pushed by Debbie ahead of us with 2 other members of the support team, Sarah C *AKA Giggler* & her partner Mike. 3 other members of the support team had decided to run ahead, Sare’s son Lewis & another close friend Adam decided to run the course and meet us at the end. Sharon’s son was also with us, because of his age he was only allowed to run to each kilometre marker. He then had to wait for us before he could run ahead again.
We reached the first kilometre marker! The ‘Color Run’ volunteers were so much fun, they kept running up to everyone high fiving us followed by a dousing in color! Yellow, yellow, yellow, everywhere, the smell was awful & it didn’t taste too good either but it was so much fun!
Collecting the colors
As we made our way around the course we started to acquire more colors, Blue was the second, followed by my favourite: pink & then the final color at the 4th kilometre was orange.
We laughed & threw paint powder all over each other & laughed some more! We shared the wheelchair as & when we needed to being pushed by only one person, Debbie, because she was in the zone! She had been training for this for weeks and wasn’t going to let anyone else take over!
I’d had a conversation with a young girly who I knew was going to the Color Run. I met Jazz (who also has MS) through twitter, we’d spoken about how great it would be if we bumped into each other on the day as we’d been chatting online for such a long time but had never yet met! We also laughed about how it would be virtually impossible to bump into each other as there would be so many people there!
Enormous amount of pride!
We realised that not long after we started we were soon overtaken by the next wave of runners/walkers and then the next and the next and the next! It wasn’t long until we noticed the ambulance behind us! You know, the ambulance that signifies the end of the race, the last ones! We’d gone from being one of the first groups to start to being the last to finish, in that moment right there I felt an enormous amount of pride!
The last to finish
The last color was in sight! The last hill, the last marker! We were the last group to finish which could only mean one thing to the volunteers, use up all the paint powder they had left and cover the last people to cross!
Finish in site!
Hip hip hooray! We did it!
Our own private colour party!
We did it but it didn’t finish there, we made our way to the final area where the remainder of what looked like a rave had taken place. Once we got to the ‘party zone’ we were given loads of packets of paint powder, this was basically to throw all over ourselves as a group!
We watched the small crowds of groups at the bottom of the hill by the party stage, luckily we could hear them. They started to count down & paint bombed each other with those packets we were given! Wow! At that moment, I had tears in my eyes! That might seem odd to some people but for me it was magical! All that colour, it was like a plume of rainbows!
Our turn! As a group, as a team, the runners had rejoined us. We counted down 3, 2, 1, paint powder everywhere! It wasn’t until I opened mine that I realised I had the best colour ever, pink, my favourite!
Remembering how my vision is and how i have lost contrast, to see all that colour was something that I shall always remember, and if I don’t remember because MS is also interfering with my memory then I have the photos to look through.
Earlier this year Deb and I had some devastating news that our precious girl Princess Olivia had kidney disease.
After a lot of deliberation, consideration and tears we decided, due to Jaxon suffering separation anxiety, it would be in his best interest if we enlisted the help of an organisation now called Forever Hounds (but at the time before their name change we knew them as ‘GRWE – Greyhound Rescue West England’) an organisation that now rescues all breeds of Sighthounds.
One of their volunteers ‘Olivia GRWE’ (let’s call her this to save confusion) came to meet us for a chat and home check. After a good chat and a look around not only the garden but the property too, she decided that any doggy would be lucky to live with us! We’ve always thought it was the opposite, after all, Fugly belongs to the animals right! We’re the lucky ones to live with them!
Olivia GRWE said that now she knew what our dogs were like and of course what Deb and I were like, the fact that Ollie wasn’t keen on high energy dogs, that Jaxon was totally laid back Jack, I needed an easy walker so a dog that didn’t pull on the lead and Debs main ask was that it not be too big!
We were told when we had our first meeting with ‘Olivia GRWE’ that the time scale of them finding us a dog was unknown, it could have been as quick as a couple of weeks or as long as months.
We had a lot of correspondence between ‘Olivia GRWE’ and myself via email, letting us know they were still awaiting the ‘perfect’ dog for us. Even though they’d had a lot of rescues in, none of them ticked all the boxes!
Whilst we were waiting for GRWE to find the ideal dog our beautiful girl wasn’t getting any better.
It appeared to us that her health deteriorated rapidly, it was so hard to see her get poorlier. We did the best we could for her with things like treadmill hydrotherapy to help keep her muscles around her hips strong & different medications to help her with her pain.
Because she was prone to getting bladder infections we found that the hydrotherapy had started to aggravate this problem. Much to her disappointment we had to decrease the amount of sessions she had. Even though this helped reduce the infections, it had the opposite effect with her muscle mass around her hips making movement in these joints more painful.
We soon realised after trips back and forth to the vets that we were going round in a vicious circle, the more pain relief Ollie had, the worse her kidneys got.
She hid her pain well, she was always such a happy little girl, she loved her life and everyone in it. Because she was so happy it was difficult to know what the best thing would be for her.
We came to the conclusion that keeping her comfortable on the pain meds was the best decision, for her, even though it meant it would shorten the time we had left with her, at least she could be happy and continue to enjoy life.
We found out some even more saddening news after a regular pee sample was done in June, the results had come back inconclusive but highly likely Ollie had cancer of the bladder, the vets wanted to run more tests to find out for sure.
We had also noticed Ollie’s occasional accident at night was turning out to be a blessing if she had just one dry night! Alongside this symptom she was also showing signs of dementia, she would forget things like seeing me sitting in a room and get the fright of her life she she turned around, we thought she was having us on when she started forgetting she’d already eaten.
I’m pretty sure both her lack of bladder control and (pardon the expression) ‘craziness’ was due to her bladder and kidney problems!
More decisions to be made between Deb & I, no matter what we thought, we had to put Ollie first, her best interests. It wasn’t about us, we couldn’t be selfish.
Knowing how much Ollie used to fret when I took her to the vets, we decided to leave her as she was, we knew she wouldn’t have wanted her time remaining to be spent there (vets) she would have rather spent her time with the people she loved, eating popcorn and marshmallows!
4 weeks later on Thursday 7th July 2016 we had a phone call from Olivia GRWE, she told us about a young chap they had at one of their kennels. He was a young whippet they had called ‘Flute’ after one of the fairies in ‘A midsummer night’s dream’ as he was brought into rescue with three others at the time of Shakespeare’s anniversary. The only information they had on him was that he was found roaming the streets of Lincolnshire, no collar & no microchip so he was taken to a pound there & then collected by GRWE to be rehomed.
We received another phone call on Sunday 10th July from another helper from the charity, the lady that was looking after Flute told us more about him & his personality.
The same day Ollie was much worse, she was panting more than usual and kept trying to drink her body weight in water. Both of these were symptoms of her being in pain. As the day went on she didn’t get any better, in fact her breathing got worse and she went off her food.
I took her to the vets the next day as she still wasn’t eating but had been violently sick, the vet gave her medication to stop her being sick, an opioid injection for stronger pain relief and a couple of codeine tablets to help her through the next 2 days whilst we made the hardest decision any pet owner has to make!
We had already arranged to meet Flute that following Sunday but by the Wednesday Ollie was so much worse, she had at this point completely stopped eating. The vet had told us that the cause of her being sick was very likely because of her Kidneys. We knew at this point it was time. We knew that Ollie would be the one to tell us when she was ready. This was the day we all said goodbye to the kindest, happiest little girl that had enough love to give to everyone she met.
Our hearts broke, we were lucky enough to have met this sweet girl when she was four weeks old and honoured to be in her life as her ‘Fur-Mummies until she reached an incredible age of 13 yrs and 4 months.
We were all so lost, we could only focus on the moment, I had completely forgotten about that young whippet we were supposed to be meeting! All four of us were supposed to be meeting him!
Poor Jaxon, he was so lost! His whole world had been turned inside out & upside down!
We were now starting to realise that this was a dog that wouldn’t do well on his own.
With the support of all our friends and family and the thought of that little whippet in need. The decision was made easier to continue with the original plan.
So, Sunday 17th July 2016 the three of us jumped in the car and headed to Hertfordshire to meet the little Whippet named Flute! All being well if he and Jaxon got on we would be bringing him home that day and he would have a new name!
Two hours after arriving at the kennels where Flute was kept, we were returning home as a family of four again.
We all fell instantly in love with him! He might be a tiny boy but he has a big heart, he loves life, everyone he meets and thinks everyone should love him the same too and believe me, you will!