We finally have our very own Another MS Warrior logo! Dave Gilmore from David Gilmore Design very kindly put this together for us over the weekend.
You can see more of Dave’s fabulous work on this Instagram page here … davidgilmoredesign
We have also launched our own Instagram page, which will be managed by my daughter, Niamh … anothermswarrior
Twitter page coming soon!
Two weeks ago, we launched our fund raising page with the aim of raising £40,000 to fund HSCT treatment abroad.
www.gofundme.com/another-ms-warrior
Please could I ask you to think about whether you might know anyone who might be willing to help? Please share our fundraising page far and wide. I know of someone in my position who had their treatment paid for in full by a wealthy friend of a friend of a friend who saw the link on social media!
I am finding fundraising hard going – it really isn’t easy to ask people for money and at times, I have wanted to scrap the idea all together. I feel incredibly vulnerable and exposed having to be so public about my life. My children, close family and friends are being wonderfully supportive and are encouraging me to keep going. To put it bluntly, my only other option is to keep quiet and slowly decline into disability.
To boost our fundraising efforts, we have a number of events coming up:
1. Manchester Half Marathon, Sunday 14th October 2018
Connor, Niamh, Gleaves, Nick and Heather are training hard for this event and the blisters on Niamh’s feet are almost healed!
2. 58 Mile Peak District Mountain Bike Challenge, Saturday 27th October 2018
Alex, Connor and Gleaves are taking on this gruelling challenge
3. Tandem Sky Dive, date to follow
Callum is organising the opportunity for volunteers to take part in a tandem sky dive and hopefully raise some sponsorship money. We have a growing list of people
Who would like to do this (possibly including me!) …if you would like to be added to the list, please let me know. Cost will be around £200.
4. Evening Event, January 2019
This will be an evening of music food, games, raffle, auction and anything else we can think of! We have a fantastic venue in Prestbury and some great entertainment lined up, including The Red Shells and Beth and the Beats.
If you have anything that you could donate as a raffle prize or auction item, we would be very grateful.
There are further events and sponsored challenges in the pipeline, so watch out for those. We are also open to further ideas and suggestions.
If you’d like to sponsor any of the participants taking part in sponsored events, please donate to our GoFundMe page and mention them in your comment. You can also sponsor individuals by contacting them in person.
If you know of any businesses that may be willing to offer items or services as raffle prizes or auction items, please get in touch with one of us.
Thank you for all the amazing support …I really do appreciate it xx
Today was my fourth day of self-injecting Rebif (3 times per week). I’m finding the actual injecting fairly easy. My idiot proof injecting gadget does most of the work and it’s mostly not too painful (it hurt a lot on Sunday but much better today so I must be getting the hang of it!).
Unfortunately I am struggling quite a bit with side effects. Following advice, I have been injecting in the evening so that I can sleep through the peak time for side effects …only I don’t sleep through them! So I now have 3 nights a week feeling cold, shivery and achey all over, each followed by a day of feeling light headed, exhausted and nauseous. By the following evening I feel fine again.
I am currently on a very low dose of 8.8mcg with a gradual increase to the full dose of 44mcg.
I’ve asked for advice on an MS support group and it seems these side effects are not unusual, although most people don’t experience them until they reach a higher dose. Apparently it can take several months to acclimatise and for side effects to settle … already I know I can’t live like this for several months!
This evening I have followed advice and have injected earlier in the evening, taken paracetamol an hour before and am drinking lots of water …fingers crossed I have a better night tonight.
Today my nephew, Zeb, niece Anna and his friend Skye set up a stall in their village to raise funds for our campaign. They baked a cake and sold a few other bits and pieces too. Thank you Zeb, Anna and Skye xx
Unfortunately they live in a very small village and didn’t have quite as many customers as they hoped. If you have a couple of spare quid you could dontate, giving Zeb, Anna and Skye a mention, this would make them very happy! (Sorry, I won’t be able to send you one of their yummy cakes!)
In other news, a friend of Connor has decided to take on an amazing mountain bike challenge. Here is Alex’s plan …
“October 27th 2018 I will be completing this ride with Connor. Almost 100km (around 58 miles) distance and with around 2.8km of ascent over gravel, loose shale, rocks, mud, through streams and maybe a little bit of tarmac, this will not be an easy task for a relative amateur like myself.”
To see Alex’s route, click here
To support Alex in this massive challenge, you can sponsor him at my GoFundMe page (and wish him good luck in your comment).
Plans are coming together for an evening event in November and we are hoping to get bank and PayPal accounts arranged in the next few days.
Thank you to everyone who has been in touch by email, phone and text and to family and friends for all the hours of planning and discussion. We’ve come a long way in a little over a week!
I have become a bit of an MS geek over recent months, reading and researching, visiting MS websites, joining Facebook groups and reading blogs. A common theme amongst MSers is the need to raise awareness of the disease so I thought I’d do my bit!
MS is a strange one – common enough that most people have heard of it, amazingly diverse in its presentation and rare enough that most of us are likely to know just a few MSers and assume everyone’s experience is the same. MS is sometimes described as a “silent” disease as so many symptoms are hidden. Wheelchairs and walking sticks are visible but there’s usually much more going on that that. In addition, experience of symptoms can vary from day to day or even hour to hour. Sometimes I stand up and am unsure if my legs are going to work at all – at other times I feel almost “normal”!
MS is an autoimmune disease where the body’s own immune system mistakenly attacks a protein called myelin. Myelin provides a protective coating to the spinal cord and within the brain, so it’s always going to be a problem when it’s under attack. The symptoms experienced by individual MSers depend entirely on whereabouts in the central nervous system the autoimmune attack takes place and on the severity of the attack. Since every organ, limb, system of the body is connected to the central nervous system, it is easy to see how the range of symptoms commonly listed are possible.
Before this disease crept up on me, I assumed that MS was mainly about muscle weakness and mobility issues, but now I know it’s much more complicated than that. When messages to and from the brain are interrupted due to inflammation and damage to the myelin layer, lots of things can go wrong.
I am lucky that I haven’t experienced bladder, bowel, breathing or swallowing problems. I am also lucky that I haven’t lost my mobility and over all my symptoms aren’t bad at all. I have weird sensory symptoms in my legs, feelings of hot and cold, tingling, numbness and a bizarre sensation of having something tied around my knees! My feet and lower legs are often numb or feel cold, heavy and dead. Often my balance and coordination are poor – I wobble and can’t walk in a straight line, I fall over and bump into things. I have stiffness (spasticity) in my legs, have lost a bit of control of my left hand and fatigue gets the better of me from time to time.
I really don’t want to get any worse than I am now. I worry about having more relapses and developing more symptoms. I worry that my disease is becoming progressive rather than having periods of remission.
And I’m not supposed to worry as stress is thought to be a contributory factor in triggering the faulty autoimmune response! ???
For further information on MS symptoms click here …
Well today has been a rather emotional day for me and my family. We launched our fundraiser just a few days ago, very unsure of how it would fare and mostly hoping not to offend anyone because we are asking for money …today we reached our first £1000!!
By the wonders of technology, I heard about this through a WhatsApp from my sister in Germany (I love how technology helps us to stay in touch with loved ones who are many miles away!), so quickly checked the GoFundMe page.
Not long after this, the fund received a flurry of donations from various good people from Stephenson’s Catering Equipment. Both my children work for Stephenson’s and they decided to share the appeal with their managers and colleagues – their generosity has really touched us …thank you everyone.
Stephenson’s are worth checking out if you need any kitchen or catering equipment – they sell to members of the public as well as to bars and restaurants. They are also taking steps to provide environmentally friendly products and have the biggest selection of paper straws I have ever seen!
Click here for more …
In other news – no adverse reactions to my first shot of Rebif. Fingers crossed for the next one on Thursday ??????
Today I had training on how to self inject Rebif, in the hope of delaying a further MS relapse. My daughter came with me to hold my hand and support me by taking in all this new information too, however, I needn’t have worried. I have been given a magic gadget that does most of the work and as the needle is very fine, I barely felt a thing!
Rebif is also known as Interferon beta 1a and is a real money spinner for its manufacturer, Merck. I have been told that this drug costs the NHS £11,000 per year for each patient – I can’t find any confirmation of this online but have found mention of 5,000 USD per month. I imagine the NHS must have some sort of supply deal with Merck.
It’s all a bit mind boggling! This drug is not going to make me feel better, it won’t cure my MS or stop it progressing but it might reduce relapse rate by up to 30% …or it might not. Even when/if I have another relapse, it will be impossible to know the impact Rebif has had on this.
The potential side effects are also mind blowing! Injection site reactions, flu-like symptoms and depression are common and there are other less common ones too. I will need blood tests every 3 months to check my liver and kidneys aren’t being damaged by the drug. Writing this, I am wondering why I am even taking it!
Rebif is one of the kindest MS drugs – there are others that are more effective but the side effects are scary – permanent damage to the immune system, increased cancer risk, severe depression and suicidal thoughts – I don’t ever want to try these ones!
I have my fingers crossed that we can raise the money needed for HSCT so that I don’t have to think about these drug options again and my body has a proper chance to recover from the MS monster.
Today a fab bunch of people signed up to take part in the Manchester half marathon to raise funds for my HSCT appeal.
Thank you Connor, Adam, Niamh, Heather and Nick …I’ll be there to cheer you on!
To sponsor the team, please donate below (and mention them in your comment).
Yesterday we launched my GoFundMe page and put out an appeal for help to raise £40,000 to pay for HSCT treatment for my MS.
I am so touched by the amazing response from friends far and wide, old and new.
We now have the following events in planning:
??♀️ Half marathon
✈️ Sky dive
? Tough mudder
? Raffle
And some kind of social event with food and live music.
Thank you to each and every one of you who has offered to run, jump, cook or do anything else to raise money. Also to the kind people who have offered help with accounting, with managing things online and with contacting the media.
I will be putting the link to our GoFundMe page at the bottom of each post. Please share if you can …every little bit helps.