Tag Archives: #vasculitis

Rare diseases, beyond bike riding & Harrison’s Fund

In terms of kilometres covered, my Festive 500 was a total success with 555 km.  A brilliant patch to join my other 9 Festive patches turned up from Harrison’s Fund.  This made me really happy.  However, I didn’t meet my secret target of raising a £/km ridden.  As my fundraising page is still live, I decided to see if I could reach my secret target, but I figured a change in direction was needed.  Bike riding was clearly not going to cut the mustard, but I still wanted something that required my time and skills.

Why continue to pursue fundraising for this small charity?  The competitive side of me relishes a challenge and once started, the drive is to complete, so I have unfinished business.  There is also a big part of me that identifies with the predicament these babies (through to young adults) are in, along with their families.  I have a rare incurable disease, vasculitis.  Unlike my father, who had vasculitis of the lungs, mine won’t kill me.  However, it will and does hover over my life like a dark cloud.  It constantly pursues me.  I can’t get away from hospital appointments and treatment is an inescapable reality of life.  And it’s always in the background that my vasculitis may cause further damage to my nervous system as it has already done a pretty good job on my left leg.  So, if I can support research to help young people such as those with Duchenne disease lead better or longer lives, I want to do that.

I’ve sewed since before I can recall.  My first school memory is of the indignity of having to sew like a ‘baby’ using double thread; I was already adept at using a single thread like an adult.  I reckon I was 5 rising 6 at the time.  Sewing and making things have been in my life way longer than riding a bike.  There have been periods of not sewing or making things when I’ve either been extremely ill or after my late partner Jon Jennings died.  But the need to be creative doesn’t really go away, it sits silently in the background while I do other things, like ride silly amounts of miles. 

Lockdown, with the restrictions it has imposed, has given me more time to do other things as going for long rides is simply not possible.   I’ve had more time for my other passions.  Time for gardening and, with the shorter/ cold days, for sewing.  Before Christmas, I decided to sew masks for family and friends, prompted by a conversation I heard while queuing for a coffee at Osterley Park café.  Two ladies were discussing the merits of the various masks available and said that the shaped cotton ones were best.  I trawled the internet and found a pattern.  I made masks upcycling some good quality close-weave fabric from my stash.  I had some Christmas fabric, so made a few with that for fun and to cheer people up.  Feedback has been that the masks are excellent – they do what they are meant to and are comfortable to wear. They bring some fun and joy with the patterned fabrics I have used, in a world that can be rather gloomy.

So, given I have the time and the materials, I have been beavering away mask-making.  So far, 20 have been produced.  I have another 25 cut out and ready to sew.  All the masks are made of good quality fine weave fabric with ear-friendly elastic and have a pocket to put a filter in, which can be bought on-line.  I am going to make these masks available to buy for £5 each and I will cover the postage to you.  The first 20 go on sale with the publication of this blog.  I have some plain, but mostly patterned.  If you have a particular colour or pattern wish, I will endeavour to fulfil this.

The mechanics for buying your mask(s) are either via my Harrisons Fundraising page or via PayPal .  On the fundraising page, if you click the <make yourself known> button, an e-mail will come to me so I can get in contact with you for your address. .   Alternatively, leave a DM on the twitter account the co-pilot @sunniethehoob and or in the comment box at the bottom of this page and my ‘mask enterprise manager’ will sort you out!

Please note, paying directly to the Harrison’s fund if you are a tax payer raises an extra £1.25 per mask.

Or you can pay if you wish by PayPal

Hand Made Masks

hand made masks raising money for Harrison’s fund

£5.00

Even if fun-patterned masks are not your thing, you have at least learnt that I’m not just about the bike!

The Brevet Bird