Thursday, 22 January 2015

Misunderstood

Misunderstood = To fail to interpret or understand (something) correctly.
 
I have two daughters who suffer from Myalgic Encephalomyelitis (M.E.), defined as being "A complex illness adversely affecting multiple systems including the brain, heart, immune, neuroendocrine and circulatory systems."
 
This is a hugely misunderstood illness, not just by a huge swathe of the general public but also by so many health care professionals who have been drawn in by the psychiatrists telling them that it is purely a Somatization disorder - i.e. psychologically based producing physical symptoms. This is not true, I quote this paragraph from Invest in M.E. (a respected charity who support sufferers, raise awareness within the medical community and invest in biomedical research projects into cause and treatments for the illness).
Definition Problems M.E. in the UK has suffered from the lack of adoption of a clear clinical diagnostic tool, resulting in M.E. sufferers not being identified correctly. Instead M.E. has been confused with other conditions that cause chronic fatigue. This obfuscation has lead to the psychiatric lobby being able to diagnose M.E. sufferers with "somatoform" disorders, such as "Faulty Illness Belief
 
Prior to their diagnosis I admit to being mostly ignorant about the illness. I had heard all the references to it being something called "Yuppie Flu" and meant sufferers had very little energy ~ that is where my knowledge ended. Having seen my daughters suffer and how massively it has altered the course of their lives I now know how fully ignorant I was. My fear is that, unless you live with it, or care for someone who suffers from it, the general population continue to live in ignorance about this serious illness and are blasé and unsupportive in their behaviour towards sufferers. So the large number of sufferers living with this life altering illness are left sadly very misunderstood by the majority. This is something I have vowed to work towards changing, by talking to the people who know us about the illness and joining force with charities working towards raising awareness about it and also money towards the funding of biomedical research to try and find out what causes it and treatments to help combat the symptoms and help those who suffer to reclaim their lives. There are people who will say "Oh why is she banging on about this again" and read no further, sadly I can't do anything about that. BUT there are so many lovely people I have spoken to who have been surprised to hear about how M.E. can affect a person so severely and have asked questions, shown an interest and left me with the promise to help me spread the word ~ M.E. is not a psychological illness, it is not a case of "just being tired" but so much more than that.
 

 
Why am I writing about this now? Tasha is having a huge battle with M.E. and the symptoms it is throwing at her causing her to spend almost all of her time in bed, struggling to even send a text message (and so enlists my help to send it for her), is in pain, has digestive issues, can't think clearly (brain fog) and can barely keep her eyes open for any length of time.  Her mental health is in decline too because she worries that the people she cares about, the few treasured friends she has remaining may think badly of her. This is because due to this illness she can't keep prearranged arrangements to see them or keep in touch as she goes for long periods of time without any contact. She worries they will think she is just being lazy and rude and will lose patience with her and become bored of supporting her because her illness goes on without her seemingly getting any better. Recent articles in the press such as... "ME: fear of exercise exacerbates chronic fatigue syndrome, say researchers" which, was in the Telegraph, among others of a similar vein also printed in different publications, haven't helped her with her anxiety about how others may think of not just her but others suffering from M.E.
 
Every time I see M.E. articles in the press my heart sinks as it is usually all about how psychiatric treatments such as Cognitive behavioural therapy (CBT) can help patients recover and get back on with their lives. Usually this advice is combined with the idea that Graded exercise therapy (GET) alongside CBT will be the absolute cure. I read these articles with a sinking heart and know that there are certain people who will use this (false) information against sufferers, telling them that they just have to work at telling themselves they aren't sick and put on a pair of trainers and get on the treadmill and hey presto, they will be cured!
 

I am hugely against the idea of GET because in the beginning, when we were very new to living with M.E. we decided we would do everything we were advised and do whatever it takes to get the girls better. So we agreed to try it with our youngest, Tara, who became sick first. We were told to get her to walk to the first lamp post in our street as fast as she could and back again twice a day, no matter how tired or unwell she felt. Each day we had to add a lamp post and keep the speed up. By the end of just one week she was in a huge amount of pain, exhausted, waxy coloured, nauseous and just very unwell. So we discontinued hoping she would pick up ~ she didn't. We ended up in a pain clinic and on amitriptyline then referred on to an osteopath who helped relieve the pain and carry out lymph drainage massage (which she taught us to do to continue at home). The combination of medication and osteopath helped enormously with the pain, but the damage by the GET lingered and 5 years on she is still mostly housebound, attending school via a virtual school using her laptop in her bedroom. Social activity with her peers has to be carefully planned with the knowledge that bed rest will be necessary for a few days afterwards. Tasha is more severe than Tara, she gets intermittent paralysis of her legs, burning sensation of her skin as if it is on fire and extreme fatigue, meaning some days she has to shuffle to the toilet on her bottom because her legs have no strength in them to carry her and allow her to walk. Both girls have a Blue Badge which we find invaluable and wheel chairs if we need to go more than a short distance. 
 
However, I am not advocating that they don't do anything at all either because it's important to keep the joints and muscles moving in whatever way you can. Whether that is via relaxed passive movements for those severely affected and unable to exercise themselves, to gentle stretches, pottering intermittently around the house, walking, swimming, gentle sensible exercise etc - whatever you are able to safely and comfortably do without causing Post-exertional malaise (PEM) "is one symptom of chronic fatigue syndrome (CFS), but is itself more complex than a single symptom. Patients experience fatigue, pain, cognitive difficulties, sore throat, and/or swollen lymph nodes after previously tolerated physical or mental activity. These symptoms may appear immediately after the activity or after a period of delay, and may last days or weeks." What you are capable of doing depends on the severity of your M.E.  When the girls are able to they walk for short distances either with or without the crutches we have for these occasions with the back-up of a wheelchair should they need it. They do gentle stretches and try to keep their muscles moving and we very carefully monitor them, as they do themselves and pull back when they feel it is too much for their body to cope with. They are not lazy girls, before they became sick they were both hugely physically active, Tasha with sport and Tara with dance. They were devastated when they had to give these activities up and so when M.E. sufferers are called lazy it is like waving a red rag at a raging bull and I get onto my soap box and rant angrily on at anyone who cares to listen!
 
Thankfully there are others who feel the same way as I do, so I share this brilliant blog post in reply to the articles in the press saying that exercise is beneficial for ME sufferers ; Utting-Wolff Spouts

 

It is only by talking about it and challenging old out~dated beliefs that we can change public perception, gain support to raise funds for research into treatments for the illness along with tolerance towards those who suffer, giving them the much needed support and understanding they require.
 
Remember, the first step towards helping someone with an invisible illness is to tell them you believe them and move forward from that. For a sufferer to know they are believed and more importantly supported matters far more than you could ever know.
 
 
x~X~x


Friday, 9 January 2015

Gearing Up For A Brew

I'm going to share a little secret with you. Ever since I was a teenager and sampled my dads home brew I vowed to one day brew my own range of exotic fruity alcoholic beverages and that they would be much better than dads ~ which were exceedingly good by the way.

So, when it came round to my 40th birthday I decided that this was my time to brew but as with many best laid plans this didn't come about as life events took over at that point which needed all my attention.

So, the home brewing was put on a back burner, with the promise to revisit another day. WELL, the day has arrived ~ the eagle eyed Dave spied on eBay some great fella who was selling off all his home brew paraphernalia. So after some breath holding & furious bidding we managed to win the wine making kit which we collected yesterday...

Look at all this stuff!!!
I have not prepared for this at all and so need to order myself some wine-making equipment steriliser & cleaner solution powder, along with some wine-making kits, just so I can get the hang of using the equipment first before I start to branch out and make my own fruit versions. I also need to read this...

Which my lovely hubby purchased for me to read and arm myself with "how to" knowledge, along with a CD loaded with more information for novice wine-makers, which means I shall be kept busy reading over the next few weeks.

The lovely gent who sold us the equipment used to be a huge home-brewer, making wines, beers, liqueurs etc but sadly has had to give it all up for health reasons. He had a batch of home brew left which he had decided to share between us (as winning bidders) and his family when they visit from abroad in a few weeks time.

So here is our 6 bottles of October 2013 Red which he very kindly gave us ~ but we have not yet been brave enough to crack open and try.


So, hopefully, within the next few weeks I shall have my brewing table full of multi-coloured demijohns, hopefully looking something like this...


... with the hope that the results are delicious and not similar in taste to paint stripper *crosses fingers, eyes, legs, toes, touches wood etc ~ you get my drift!*

 So today my wine-making journey begins ~ wish me luck....
x~X~x

Friday, 2 January 2015

Do You Make New Year Resolutions?

New Years resolutions ~ do you make them? If so, are you able to keep them or do they fall by the wayside pretty quickly?

I'm not a resolution maker ~ I used to be in my youth but after spending years drawing up lists of all the amazing new things I was going to do with the enthusiastic optimism that I would be able to stick to it and then becoming terribly disappointed in myself for not fulfilling them because I had put far too much onto my list with unrealistic expectations about what was achievable and/or affordable.

If resolutions were dares or fun challenges then maybe perhaps I would join in, perhaps...but then again, maybe not. Just as I was about to publish this blog I spied my friend Stacys' blog, in which she also talks about not making resolutions but small challenges. Stacy writes a regular Friday blog for the Watford Observer and I look forward to reading it each week with my big vat of coffee in hand. It always makes me laugh, such as when she says "I’m determined to play at least one song on it, along with the panpipes that I  purchased last year, still hung over my bed head un-played. If I’m feeling deluded enough I might even go for a little Cacharpaya by Icantation for those of you old enough to remember the chart topping catchy instrumental of 1982 ." Whilst always raising a smile she also  touches on more serious topics too and this week she is calling on people to consider donating bone marrow for 6 year old Emma among many who desperately need donors to come forward. Check her blog out here.

So ~ do I make resolutions? No, instead I look at the New Year with different eyes, I compartmentalise my life into sections of each complete past year and the events held within them. So as each year closes I reflect on the events that have occurred, the lessons I have received and what new knowledge and wisdom, if any, I have extracted from them. Then I look forward to the impending New Year with a sense of anticipation for what lies ahead, for the choices I will make and fresh lessons I will learn. 

Instead of making resolutions I look at what needs to change from the past year and how I can work those changes realistically into the forthcoming one. The key is to focus on what really needs to be addressed and how best to do that, this for me is more mapping out what I can plan for this next section of my life with room for life to happen around it.

So, for 2015, what am I thinking? 

  • As always "Girls' Health" is high up on the need to address list, with two chronically ill teenagers in the house with symptoms which fluctuate widely we are always needing to reassess their needs and what we need to seek help for on a regular basis. This is not within our control, but how we approach it is. So we are pro-active where we can be, we go to regular maintenance appointments to help ease what we can. We have check-ups via GP and regular reviews with our OT and CAMHS teams. The Consultant checks in twice a year for Tasha and three or four times for Tara. We make lists of what we would like checking and then utilise these appointments to keep on top of all the medical issues to ensure the holistic approach is maintained towards their care. The same goes for the girls mental health requirements ~ all three have their own specific issues and over 2014 our plans were put into action which means they are now all receiving the specialist help they need to address them.

  • Next on the list is "Income" my hubby Dave is self-employed which means no stability of income, I am occupied as a unpaid full-time carer although I have my online shop on the side, which provides a very limited income. Towards the latter end of 2014 work and health became linked when Dave suffered two heart attacks in early December.  Which, as you can appreciate, knocked the wind out of our sails somewhat. Currently Dave is unable to work as he is still recuperating and following the hospitals rehabilitation programme. This means we have no income coming in at the moment ~ scary times! However, strange as it may seem, we are viewing this terrible episode as having a positive effect on our lives. It has brought into focus that we need to take care of our own health as parents and not just that of our children. Stress, bad habits and sheer bad luck were at play leading to Dave having his heart troubles ~ the Consultant is of a mind that even if he hadn't enjoyed the odd bevvy or biscuit leading up to this event that it would have still have happened. He explained that there is often no rhyme or reason to who heart attacks select and that in actual fact Dave wasn't leading a totally debauched lifestyle and so shouldn't beat himself up about it. We have decided that yes this was/is a dark time but let's not let it hold us in its shadow and instead extract ourselves from its hold and find a way to overcome it, and do as the wonderful Terry Pratchett says...
  • Income leads onto "Work" and I am thrilled to now be working alongside my husband in his business, helping him organise his office and work space, typing reports and helping him with the running of his online business, as well as some hands on stuff too. The new unit is so nearly ready for us to occupy the office space, hopefully we will be in by the end of January. I will have my desk in the office and have a new laptop so I can flit between home and office (it is a ten minute drive from home) to collect work and so means I can continue to care for the girls whilst also working to help Dave. For Dave it has meant altering how he spends his working days and the type of jobs he takes on. He has to now be more conductor, organising the rest of us working beneath him and taking more of a physical back seat. This, we feel, will work really well and end up making the business more streamline and efficient. It has meant he has to relinquish the reins in some areas and have faith in those in his employ, as before he was very hands on and hated to delegate ~ so very much the silver lining in all of this.

  • This also leads on to the health focus on ourselves, so I add "Personal Health" to the list, which is something we have previously ignored as we have always prioritise the girls. The heart attacks have brought forth the need for new diet and exercise regimes, which is great. It is easily implemented whilst Dave is convalescing and we think we have the daily routine sorted for when he is able to ease back into work in a few weeks time. Already he is feeling the benefit and I must say that myself and the Hairy Trio are enjoying our daily walks with him too.

So, for me these are NOT resolutions but life tweaks to maintain a healthy life style, following the diet plan as given to us by the rehabilitation nurses and continue and build on the gentle exercises as advised by the doctors. We are also aiming mid-January to join our local patient and partner group for sufferers of heart attacks and involve ourselves in their activity, also to continue to support our girls to find stability with their mental and physical illnesses.

So as we wave hello to 2015 we are looking towards the coming year with a sense of excitement, hope, anticipation and curiosity. What surprises is life holding in store for us? I just hope that the surprises are all good ones and that we find some peace, harmony and a more settled period in our lives.

2015 is a journey yet to be travelled, an empty road leading to who knows what. As we step onto the tarmac and start to walk let's hope that we have some fun times and adventures along the way.
Wishing you all a very Happy New Year and hope that for you it is a good one, memories waiting to be made and adventures to be lived.
x~X~x