Almost go time!!

www.dcumps.com is the place to be tonight. From 9pm tonight (Irish time) all the way through to 9pm tomorrow, MPS, a society in DCU, Ireland will be holding a 24 hour live broadcast charity fundraiser in aid of Histiocytosis. There will be great entertainment for you all night! All information and links are available on the website, and don’t forget to let your friends know! The donation link again isΒ https://www.justgiving.com/dcutv/4w350m3/donate… please donate as much as you can to this non government funded charity. This cause means an extra special lot to me as this disease directly affects me and my life. The Histiocytosis Research Trust has never received such support from a charity fundraiser like this before, and it would mean the world to have the support and donations from around the world!

Determined for change

Back in the hospital after what feels like forever (a month), hoping for news that I can start on the second medication but not holding my breath as I’ve only been on the first chemo for 10 weeks.

I amn’t seeing any improvements as of recent which is further confirming my belief it was my diet making the improvements so sooner my weight is at a healthy weight, and I can get back to the diet the better, however I’m in two minds about the diet because it means I have to check everything for the sugar content which is a real pain 😩

But I’ll do whatever it takes to get back walking

There is an end

I was over thinking that I might never get better and continue to degenerate until there’s nothing left… and then I heard from a friend in the States who has the same neuro degenerative condition that I have who is starting to regain abilities lost! Apart from me having the degenerative condition for A LOT longer… I’ve been told a million times when I hear of someone else getting better that “no two people with this condition react the same way to the same treatment” I have that at the back of my mind but my initial thoughts are ‘f*** it we should just try!’ I don’t see why I shouldn’t try it . But trying to convince my oncologist to abandon my current treatment plan is another thing… BUT to know that there is light at the end of the tunnel is a huge relief 😌😌😌😌

Sorry!

Hello to the two people who probably still read my posts πŸ™„. I realise I haven’t posted in a long while, but I’ve had nothing new to post about! Juggling motherhood to a two year old child with exercise to get better along with research into new medical drugs to help me get better AND to keep up with the efforts needed to be a good partner PLUS living everyday life and the daily tasks involved; unfortunately blogging is down near the bottom on my never-ending to do list.

Since finishing university my main target has been to get back walking again, however that is not where I am yet. I am also trying to stretch my leg out so I will be able to get back to using the Eksoskeleton suit, as I think this will be a great template for my treatment tablets to work off, and in the long run, I hope this will enable me to walk again! See! Full circle… I see it anyway

Toodles for now and sorry again for being non existent for so long πŸ™ˆ

Update

So today may be a milestone in my recovery.

I rolled over in bed MYSELF!!! A hugely overlooked and taken for granted ability most people do without thinking, but for me, I haven’t been able to move in bed myself for a number of years. I will see tonight if it was just a lucky moment (hopefully not ) or if this ability has come back.

I am doing all I can exercise wise and I am limiting sugars to 30g a day with one cheat day per week to help this treatment work as well as it can: 80 minutes of cycling and 40 minutes of hand cycling. If anyone has any recommendations on anything else I can do, please leave a comment.

I go back to the hospital next Tuesday and I’m hoping for progression in my treatment.

Teeny tiny improvement

I’ve been taken off my chemo tablets for over a month now and I’ve seen little improvements I can only put down to these tablets. I am pushing to be put back on them because I notice an improvement even if the doctors aren’t convinced.

It really excites me to see these improvements because they seem to be the abilities I lost at the very start so it is with my hope the tablets will repair the damage from early on first, then the most recent.

It started off first with my voice, I now feel I can speak louder, but not shouting yet, I can also speak longer before getting breathless.

I am going to the hospital tomorrow and I’m hoping they will put me back on the tablets because I have never been this excited about potential improvement

Graduation

Two weeks ago on Thursday 8th finally graduated from DCU.

After 4 years, 1 year that wasn’t anticipated and 3 years unwanted, I have graduated with a BA in journalism, however I do not want to be a journalist, I want to be a motivational speaker, it is a difficult profession to get into. I can now focus on exercise and my mobility; although I have a 2 year old child, he is in creche from 9am to 5pm 5 days a week which gives me a good 8 hours to focus on exercise.

As far as the job front goes, I am looking to go on and do a master’s and graduate in an Eksoskeleton suit 😎😎 (like below)

As I wasn’t able to this time because of a burn I had done to my leg (with a kettle), which tightened my tendons.

Unless I become a millionaire in the meantime, the master’s won’t be neededπŸ˜›πŸ˜›πŸ˜Ž

Worrying, happy times: update

I’m home after spending 5 days in hospital due to a temperature reaching 39.8 and as a result I have been taken off my chemo tablets (DUN DUN DUUUUN😦😦😫😫) which means I might be at risk of deteriorating, but I have an appointment on Tuesday to hopefully get back on the tablets minus the temperature.

In OTHER NEWS! rather exciting news, I have passed all my exams in uni meaning I am GRADUATING IN NOVEMBER!!!πŸ˜„πŸ˜„πŸ™ŒπŸ™Œ I am delighted as it means I can put the last unexpected 6 years of studying journalism to bed with a degree at the end. NO MORE STUDYING!!😁😁 which I am delighted with as studying wasn’t exactly my forte. Now the only stress I have is finding a graduation outfit… oh and to walk for graduation, but I have a trick up my sleeve to ensure I can walkπŸ˜‰ just in the case my result doesn’t happen in time. Either way, I’m up for the challenge😎😎