Thursday, 29 March 2012

Baking With PVFS

For those of you who have never heard of PVFS it is not a new baking ingredient or utensil but the condition I found myself diagnosed with shortly after Christmas this year. I have not mentioned my illness in my blog before now because I kind of thought people reading a baking blog want recipes and a feel good factor and todays blog is probably neither.  My dear friend Gem suggested I should blog about my illness to explain how PVFS is affecting me and how my baking has been affected by it. Post Viral Fatigue Syndrome is similar to Chronic Fatigue Syndrome and from what I have so far gleaned about the condition it is diagnosed after a viral illness where the main virus finishes but the fatigue symptoms continue. This is the point where I should probably put my hand up and admit that I never really bought the whole Chronic Fatigue Syndrome phenomena although I had changed my views when a close friend of mine developed CFS a couple of years ago and I saw how her life was changed by this terrible, persistant fatigue. Because I didn't see this friend regularly I didn't fully understand the debilitating nature of the illness. Now sadly due to my own illness I totally understand and feel sad that I really have had to walk in her shoes to fully understand this condition. I know many people in the health profession and wider world think that PVFS is a made up condition and that it is a 'malingerers' disease. I am sure some of the people in my life think I need to just buck up my ideas and get back to work and on with life. Sadly this couldn't be further from the truth for me.

I have always been a really active person who was never happier than when I had lots to do and lots of good friends surrounding me. My average week consisted of working a full time job in a stress filled profession, running a household on a day to day basis, being a full time mum to a active 11 year old (along with support from my long suffering husband), cooking from scratch most days, baking three or more times a week, blogging, running three to four times a week (to counteract the baking!) and keeping up with friends and family scattered around the UK and abroad. For relaxation at the weekend we would often have guests for the weekend or we would be visiting previously mentioned friends in different parts of the country. I loved it all, okay maybe not the long commute daily, but everything else! All this was done with a full face of make up and styled head of hair and well accessorised outfits (other people have said this about me, this is not be being vain!).

Currently I am lucky if I manage to get up, get dressed and put on the make up each day. I decided early on in this illness that having a shower, washing my hair and putting on my make up were important to me to make me feel more like the person I remember I was. The hair rarely gets blow dried and sometime I forgo the makeup if there is something else I need to do (like the occassional school run). I have lost so much of what makes me me. I am grieving for that person and am trying very hard not to look back at what I used to achieve in a day, a week, a month but look forward and celebrate when I do complete a task. It is hard to describe the fatigue I feel on a daily basis. Everyone gets tired but this is somehow worse because sleep doesn't seem to relieve it. It really is a bone weary feeling, a feeling of being hit by a bus. I am unable to concentrate for long periods due to a mind fog and give me something harder than a "chick-lit" novel to read and I am stumped. Writing this blog at times is beyond my capability, my spelling, word selection and composition become unintelligible.Thankfully Mr V-C steps in and becomes my editor.  I suffer from extreme sensitivity to lots of noise, crowded places make me feel drained and confused, decision making is impaired. If I do too much in a day (which is a fraction of what I used to achieve) I find I develop an instant sore throat and my muscles and joints burn with a ferociousness I have never experienced before. At times I can't move my arms due to the muscle strains.

 I am trying to learn to pace myself and balance the days when I have a bit of energy with the wiped out days. The good days are when i try to bake although not anywhere near as often as i used to, the recipes are much more basic than i used to tackle, the kenwood chef does the hard work and  MR Vander-Cave clears up afterwards while I rest.   But at least I get to bake. Baking has been my passion for many years, so continuing to occasionally produce a batch of cupcakes, cookies or Muffins is quite honestly saving me from insanity! Well, Baking, phone calls from my closest friends and family and Mr Vander-Cave's love, support and bad jokes are what keep me sane.

So thank you to all the people mentioned  above. Thank you to anyone reading this, if you are a CFS/PVFS sufferer you are not alone and I hope you have the love, support and a passion to see you through this illness. If you know someone with CFS/PVFS please don't underestimate how much the occasional phone call or text really does make all the difference and allows the sufferer to feel included in the life and world that is going on all around them, without them!  And finally I promise just baking and tales from the back of beyond  from now on!

 P.S. Just so you know I will recover from this illness.

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