I suppose I'm lucky in a way if you can consider caring for someone with CFS / ME to be lucky. Julie's job as a primary school teacher meant frequently not coming home before 6.00 p.m. then working late into the evening on preparation work for the following day. So coming home first and putting the tea on became the norm; house rules first home starts the tea. I'm sure sometimes she would park down the road and wait for me to arrive first- only joking dear. So I got into the ritual of preparing tea.
At the same time my father was diagnosed with Alzheimers and I got involved, along with my brothers, with helping mother - my caring days had begun.
When this terrible condition raised its head back in September 2009 I was already in a routine of coping with very stressful situations with my father so I just got on with it taking most things in my stride with Julie by my side.
How do you cope with such a condition as CFS / ME? Well the first thing was to find out what I was dealing with. I spent many of those early evenings alone researching on the internet looking for answers while all the time Julie slept away upstairs.
This is why the blog came about to try to communicate with other CFS / ME sufferers what we had found out and to try to put it all together on one site so people could easily read it. In those early days we both felt vulnerable and alone and not sure what to do next so the future developement of a blog when time permitted seemed the logical conclusion.
What did I do next
Research indicated Yoga for CFS / ME symptoms was an effective way of doing gentle excercise so I purchased a Yoga DVD specifically for CFS / ME sufferers, this became part of at times a daily routine when the symptons released their grip.
It quickly became apparent to me that we also needed to look deeper into ways of helping. Chemicals in tap water, toxins in plastic bottles of mineral water ( BPA ) banned in some countries but still used in the U.K. This all added additional pressure onto an overworked underperforming system. So the simple answer, filtered water in the house on tap 24 hours a day. After the initial outlay it works out cheaper and healthier than bottled water ( see Helpful links page ). Juicing for vital vitamins and minerals used up quickly in todays busy stressful lifestyle are essential but lacking in the highly processed supermarket brands with their " E " numbers and artificial sweetners. Juice your own, from organic vegetables if possible, and fresh fruit (don't forget to wash them first ) this will give you vital minerals and vitamins to start your day. You will need to purchase a juicing machine up to the daily rigours and the one we recommend can be found on , you guessed it the aptly named " Helpful links" page .
Back in December my research discovered a clinic in London who took a holistic approach to helping CFS / ME sufferers, they covered such varied topics as meditation, nutrition, EFT and more, all aimed at helping the mind and body to recover. So we set off to London at the end of January for 3 Full days of training in the use of these techniques . This is still very much a work in progress.
The nutritionist sorted out a supplement regime specificically for Julie to follow. This involved many costly supplements, 12 in total, to deal with various areas such as Pancreas tablets to help absorption of all nutrients, B12 lipoceutical spray as an anti-oxidant and to give energy, zen tablets for stress relief and to calm the nervous system and improve detoxification and so on and so on you get the picture.
So my daily routine consists of getting up at 6.00 a.m. 4 supplements for Julie, shower get dressed mix a glass of high protein whey powder " Immunopro RX " not cheap but the best out there ( useful links page). Downstairs have breakfast make some fresh juice for the day switch the P.C. on, change the daily uplifting desktop image with positive quotes. Search through my collection of suitable positive thinking videos (a selection under inspirational videos on front page) and chose a suitable one so when Julie gets out of bed she can start her day surrounded by positive images and thoughts. Did you know research shows that a relaxed positive attitude helps boost the functions of the immune system. Before going to work back upstairs and 6 more supplements before breakfast. I dont like this part of the morning ritual because I have to wake Julie up from a deep sleep but it has to be done for the greater good.
A few texts during the day just to check how she's doing and to encourage
her if she appears low. Back home from work and.... and well I never really know until I walk through the door what I'm going to find, is she up? is she sleeping? is she feeling ok? you all know how it is. If need be I get on and prepare tea and the whole cycle goes on and on. I can but dream that one day the cycle will be broken and we can both get back to some resemblance of normal life.
We try to keep things as normal as we can, we can't go ski-ing or mountain hiking at the moment but it doesn't stop us socialising with family and friends. We still invite friends around for dinner (no guesses for who does the preparation,cooking etc.) and try and have a good time. I certainly do, I enjoy the cooking and having a little to drink. If Julie needs to lie down on the floor to rest or even go to bed we all accept it, that's the way it is, no self pity it's a total waste of time and precious energy.
The site has certainly focused my efforts on researching the latest information that's out there and I hope to bring it to you when I find it. I have changed a lot since Julie was diagnosed with CFS / ME, in a strange way I have become more positive about things even with the frequent crashes but I'm convinced she will get better. I need to think that she will get better and Julie needs the hope of believing she will get better.
Whatever we do together no matter how small we try to live for the moment. We live for the now, no regrets, what we did in the past is just that "in the past" live for today that's all any of us have for sure. So it's all things positive no room for negativity this only drains vital energy and doesn't make you feel any better does it ?
I will from time to time add a blog to the site when I feel I have something worthwhile to contribute, but please remember what I have said previously it's not only about Julie it's about all you sufferers and carers. You all have a story to tell, let us share your stories with others so hopefully we can answer some of their fears. The fact that you are reading this means you are searching for answers too, so come on share your fears and thoughts it might just help to get it off your mind.
That's it from me, no poetry I leave that for the more talented members of the family but I will leave you with one of my favouite quotes....
Though no one can go
back and make a brand
new start, anyone can
start from now and make
a brand new ending.