Finally ME

So, finally, after 2 long years of feeling unwell and gradually seeing my health and ability to function decline I have been given a diagnosis. Up until recently all the doctors I saw decided stress was causing my physical symptoms due to psychological  strain. I was sent for therapy and put on anti-depressants which made no difference to my physical and cognitive issues. My therapist pronounced me sane (bless her, not many others would!) and I came off the anti-depressants, which only helped in making me gain a substantial amount of weight.

The symptoms continued to worsen, the more I tried to push through the more I struggled. It started to dawn on me that perhaps I was suffering from the same illness as 2 of my daughters ~ which to be honest frightened me. Being a carer and being sick yourself is not a great mix!

Finally though, I saw a new GP at our surgery ~ she saw me through fresh eyes and listened intently to my catalogue of symptoms, treatments and worries. She trawled through my medical history whilst I was with her and noted my numerous visits all saying the same thing and wondered why nothing had been done sooner for me. I felt a huge surge of gratitude towards this wonderful doctor, who not only listened but actually heard what I was saying and understood my concerns. This is not to slate my previous GP's, who are all lovely ~ but read our family catalogue of dramas and understandably decided stress was the reason for me being unwell ~ our lives our never dull, there will always be the odd trip to A&E or mental health issue to address among many other mini dramas that occur in our lives but I knew this was more and at one point thought I was going insane or imagining it all.

However, The Dave and my girls saw what was going on and made me realise I should keep pushing for further investigation as to why I felt so unwell and exhausted. Walking for miles with my headphones in, which I adore, has become a distant memory. Now I have to get taxi's when once I would walk home. I find myself napping during the day but no matter how much I sleep I am still exhausted. Pains in my joints and muscles make me squirm trying to find a comfortable position. Headaches, sore eyes, swollen tender lymph glands, sore throats, light sensitivity ~ this and so much more are now part of my life. My eldest daughter, Keisha, comes over to help me with housework and ironing because I can no longer keep on top of it. Basically, it sucks!

SO, this wonderful GP sent me for pages of test (literally sheets of A4) to ensure everything had been covered. Everything has come back as normal with the exception of me being low on the old vitamin D. As she was filling in the referral form for the ME Clinic with me she noticed that being low in Vitamin D meant that I couldn't be referred UNTIL I had been on vitamin D supplements for minimum 3 months, as apparently they could "make me better". So form half filled in she gave it to me for safe keeping and told me to come back after three months of taking the supplements to see her. I have spent every available moment in the sun for as long as I can tolerate (my thermostat is broken, so I am either too hot or too cold, never "Just right") ~ I have  also had 3000iu of Vitamin D under the tongue daily to, but unfortunately this wasn't a magical cure,

I am still unable to function the way I would like and my life is a series of compromises right now. So, back to the GP I went and this time the form is completed and has been sent off ~ I now have to wait, who knows how long, for my appointment to come through to see the team at the ME clinic at my local hospital. I know all about the nature of ME having cared for my daughters who suffer from it for the past 6 years. However, I am hoping that being a carer with ME may mean that the clinic can offer me support which I may not otherwise be able to tap into.

It's not the worst news I could have had, it's not the best either, I suppose it's all relative but at least I know the nature of this beast and so do my family ~ with 3 out of 5 of us suffering from it!

It's been a long 2 year slog, knowing I wasn't right to getting to this point. Ironically it's a relief to have a diagnosis. Now it's a case of working with what we have and doing the best we can to manage our lives and make the best of every moment. I will embrace the good days and make them count and not berate myself for the days when I am literally welded to the sofa and cannot move.

We need research into this illness, why are there so many families who have multiple members sick with it? Is it genetic or infectious? What triggers it? How can it be diagnosed sooner so sufferers can get support and help? What treatments can be found to help improve symptoms and help sufferers make the most of their lives? These are only a few questions but this is why I support Invest in ME, to explain what they do I will quote from their website

Invest in ME

"Invest in ME (IiME) was set up with the objectives of making a change in how ME is perceived and treated in the media, by health departments and by healthcare professionals. We aim to do this by identifying the three key areas to concentrate our efforts on - funding for biomedical research, education and lobbying. Invest in ME aims to collaborate and coordinate events and activities in these areas in order to provide the focus and funding to allow biomedical research to be carried out.

Our aim is to bring together like-minded individuals and groups to campaign for research and funding to establish an understanding of the aetiology, pathogenesis and epidemiology of ME. We hope this will lead to the development of a universal diagnostic test that can confirm the presence of ME and, subsequently, medical treatments to cure or alleviate the effects of the illness

We believe that the seriousness of the situation regarding ME makes it necessary for governments to provide "ring-fenced" funding for bio-medical research in to ME (as was provided for HIV/AIDS) in order to address the need for development of diagnostic tests and remedial treatments.

We believe governments should standardise on usage of the Canadian Criteria for diagnosis so that there is an agreed basis (noting that evolutionary improvement would be welcomed).

We believe governments need to not only endorse and adopt, but officially promote  the World Health Organisation classification of ME as a neurological illness, as defined by ICD-10-G93.3, separate from the psychological illnesses classified under ICD-10-F48, in order to provide the distinction of the neurological disease.

We believe that governments should provide a national strategy of biomedical research into ME to produce treatments and cures for this illness.

Our efforts are focused on setting up a UK Centre of Excellence which will provide proper examinations and diagnosis for ME patients and a coordinated strategy of biomedical research into ME in order to find treatment(s) and cure(s).

Invest in ME have no paid staff - all work is performed for free by volunteers.

I am moving forward knowing the monster I am dealing with and won't let him hold me back from doing things with my family, it'll just take more organisation, planning and compromise is all.

Since my M.E. diagnosis I have also been diagnosed as having Fibromyalgia and Hypermobility Ehlers~Danlos Syndrome. With help of rheumatology physiotherapists I have a bespoke daily regime and know the beasts I am fighting.

Knowledge is Power.

~ Blessed Be ~

x~X~x

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.

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.

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.

~ Blessed Be ~

x~X~x

Life in the Rehab Zone

Those who follow my blog will already be aware that we're not your average household.

My eldest daughter has autism, ADHD and mental health issues, my two youngest daughters with ME, along with anxiety and mental health issues. So I am a stay at home mum and chief carer of the household.

Then, just to spice life up a little more, before Christmas my husband has not one, not two, but three heart attacks!

The first heart attack happened at the end of November and was misdiagnosed by the paramedic and then GP at the time as an esophageal spasm (which can mimic all the signs of a heart attack).

It wasn't until 10 days later when he had his second heart attack in front of me in our home that he was diagnosed by the paramedic who came to us and confirmed later in hospital by the Cardiac Consultant via two different types of blood tests that it was definitely a heart attack and in retrospect looking at the paramedic ECG from the first episode that that was one too.

Later, whilst on the operating table having his stent fitted he had his third attack, giving all involved a bit of a scare! Thankfully now his stent is safely in place (his artery was 85% furred up) and all his other vessels, although a little furred, require no stenting and there is only a small amount of heart disease.

We are now in the rehab zone post heart attack.

I have to say first and foremost that the medical team at Derby Royal Hospital and associated ambulance men and paramedics were excellent, friendly and efficient in treatment and information provided. The cardiac team couldn't have been more supportive and reassuring which made our time there much easier. Dave is now going through the twice weekly rehab sessions in outpatients with the specialist cardiac rehab team. Every session they check through medications and any issues the patients have encountered since the last visit. Followed by a talk of the day either by a member of the team or a guest speaker. Talks are related to health, relaxation, exercise and diet. The last talk was by a guy from Trent PTS, talking about anxiety, stress and insomnia ~ which can be an issue for some patients.  This talk focused on specific relaxation and breathing exercises to help aid relaxation and sleep (so I'll be trying that!). Finally, they finish each session with a gym work out, individually tailored to each patient to work within their limits.

It has to be said, once you have suffered from a heart attack your life has to change, it was a massive shock and scare but we are grateful that we still have Dave with us, so the changes we are making seem paltry really.

The first change was adjusting to taking so many medications on discharge from hospital ~ there are quite a few, each day Dave has to take...

Aspirin ~ this works by reducing stickiness of platelets in the blood and therefore reduces clotting, and the risk of a blood clot within the heart and a heart attack.

Bisoprolol Fumarate ~ this beauty is used to treat heart failure and works by blocking certain chemicals in the body. It also can help reduce the heart rate and the heart to beat more regularly.

Clopidogrel ~ Like aspirin, clopidogrel is also an anti-platelet medication and is given for a year after the heart attack in conjunction with aspirin to ensure the heart is protected from any further heart attacks. (So when we reach Dave's official heart attack diagnosis anniversary we will discontinue this drug and the aspirin will carry on this job alone)

Lansoprazole ~ this is a proton pump inhibitor (reduces the amount of stomach acid), this is prescribed to prevent ulcers occurring due to long term use of aspirin.

Ramipril ~ this is a Angiotensin Converting Enzyme (ACE) inhibitor, it's specific job is to improve survival after a heart attack and is also used to lower blood pressure and treat congestive heart failure.

Atorvastatin ~ commonly known as "statins" is used to reduce the levels of "bad" and increase the levels of the "good" cholesterol. This in turn helps reduce the risk of further heart damage or heart attacks.

GTN Spray (when required under the tongue) ~ this has to be kept with Dave at all times, it is used to treat episodes of angina, however, we have been told that if the GTN spray doesn't ease any heart pain after three sprays (taken at ten minute intervals) then to ring for an ambulance straight away as could be a heart attack.

So, they are Dave's new medications. We also have to ensure that we change our lifestyle now too - since the heart attack Dave is less physically able to do the work he used to do and becomes exhausted very quickly. He is having to learn the art of delegation, something he is finding difficult after being such a hands on guy.

We also have to try and reduce stress as much as possible ~ although there are no medical findings into how or why stress is an indicator with heart attacks, it is a definite common factor with all patients and so a lot of work is done in helping patients to relax and try to avoid anxiety and stress wherever possible. This is far easier said than done ~ especially when my husband is self-employed! 

Then there is the diet, this is just a basic sensible eating plan to follow for life. Now Dave loses weight if I lose weight, gains it if I gain it because we are both foodies and so one does what the other does. With this in mind, after Dave's' heart attack I was invited into the surgery for a full MOT so to speak because our surgery know of our family situation and the high stress levels and as chief carer thought it would be a good idea.

I had reams of blood tests and a physical exam by the doctor. Thankfully my blood tests have come back all normal, with the exception of my cholesterol which was 5.5 so very slightly up (they like it to be below 5).

However, talking about risks and diet I was given a firm telling off for trying so many different diet plans in the past, from Lighterlife, Slimming World, Rosemary Connelly, Cabbage Soup, Fasting diets etc. Now I'm not having a pop at any of you who follow these diets but for me personally this led to the yo-yo effect of weight loss and then gain, which in turn was having a negative impact on my health and mental well-being. The problem is I go full pelt into these diets and follow them by the letter, and this doesn't work for me as I can't sustain it. So, I have been firmly advised to stop seeking fast weight loss and "diets" as such and to just follow the healthy eating advice. A diet where nothing is forbidden, there is no weighing or measuring, it is just common sense and portion control I find I can sustain it and it has become the way myself and Dave plan our food and menus. We don't feel deprived of anything or limited in our choices, we still have the odd slice of cake or chocolate bar and allow ourselves a tipple or two ~ the difference is now we stay within the weekly unit guidelines (something we went WAY over before) and don't binge drink (so bonus is no hangovers either). Another great tip that works in helping to reduce portion size without and kerfuffle is to use a smaller dinner plate but ensure you fill it (not pile it high though). This works well in ensuring you have a smaller portions but also somehow (whether it is psychological who knows but it works) leaves you feeling just as satisfied and full by the end of the meal as you would have done with the bigger portion.

With this new regime both myself and Dave are very slowly losing weight, I have been told that we should aim just for the slow progress of 1lb a week (anything else is a bonus really). This way we should be able to lose the weight and keep it off for good whilst maintaining an easy, sustainable, life-long eating plan where neither of us feel deprived or limited in our food choices (apart from Dave can't have grapefruit as it reacts with his medications).

The girls follow it with us too but with their individual dietary tweaks because of their health issues, Keisha is vegetarian, Tasha has reduced meat (mostly veggie) and lactose free and Tara has low sugar, high fibre, high protein.

So far life in the rehab zone is taking some adjusting to. Reducing stress is something we are working hard at combating, although as I said easier much easier said than done. Trying to find a way to earn a living within the new guidelines is going to be interesting but I know we will find a way.

Dave is doing well, he is currently suffering from some side effects from the medications but the rehab team are working at ways to resolve this ~ so more blood tests are being carried out to see if dosages can be tweaked or whether alternatives are going to have to be sought out.

This is all normal though and everyone responds differently to this situation. We have been told to be aware that depression may set in due to the changes needing to be made and limitations currently being felt. We acknowledge we are still in the early stages of rehab and being anxious and fearful is a normal response. I hope to blog later in the year to share with you our progress and hope that Dave will be feeling fitter and healthier without too many medication induced side effects.

On the bonus side though the Hairy Trio have been enjoying walks in an evening with both myself and Dave and hope to be resumed very soon.

Currently these are on hold whilst the side effect issues are being addressed as exhaustion and dizziness are preventing our walks right now as I don't think I can scoop up Dave over my shoulder whilst holding three darting dogs on leads to get home!

Life is a gift, we take the good with the bad and I am grateful that Dave is still with us and so everything else is easy in comparison to what could have been.

~ Blessed Be ~

x~X~x

To Do List by 50

Life is short and many of us forget to live it to the fullest. We get swamped by life, being mothers, wives, partners and forget the we are also ourselves in our own right. I adore my family, they make me belly laugh and class them as my closest friends. I love spending time with them which is one of the greatest gifts life has given me. We have many conversations and said "you must do that" to each other when talking about what we would like to do before we die.

Our family conversations and recent health issues have prompted me to revamp my bucket list and give myself a time frame to finish it by.

I have decided that I want to achieve these by the time I hit 50 because who knows how long we have left on this earth and when our allotted time is up?

I have now separated my list into two parts, those already achieved and those yet to mark off as completed. As you can see the yet to complete is longer, but I have until May 2019 to get them all done.

So far these are what I have successfully achieved and marked as "ticked"...

Write a blog ~ I have done this as you can see

No booze for a month ~ also accomplished in a past sober for October fundraising event for Invest in ME.

Get a Tattoo ~ I was late to the game on this one and had my first tattoo on my 41st birthday followed 3 more since then. They all have significance for me; the first is the St Cuthberts Cross surrounded by 5 stars, the cross signifies my mum (she wore a St Cuthberts Cross for as long as I can remember and bought me one too), the 5 stars are for the 5 baby boys I miscarried at 12 weeks each time. I have learnt that my body cannot carry boys and that is why I miscarried them. My second Tattoo was the M interwoven with a heart going into infinity symbol. This is our family tattoo (M signifies Mawer). The third was the little fox which Tasha hand poked onto my ankle, which means a lot to me and she has the identical tattoo herself. The final tattoo is the cont;nue one ~ this was inspired by project semicolon. I tried to commit suicide at the age of 18 and thankfully was unsuccessful, however throughout my life I have suffered from anxiety and depression and so this reminds me that life goes on.

Have a facial piercing ~ I completed this along with the tattoo on my 41st birthday and had my nose pierced at the same time.

Donate blood ~ I have been a blood donor since my late teens, gave up during my childbearing years and then returned to it after that. Sadly I can no longer give blood since my M.E. diagnosis.

Go Vegetarian for a month ~ I did this September this year  (2015).

Make my own wine ~ I managed to achieve this at the beginning of 2105 and love making our different fruit wines. The girls love to sample them too and so they never last long

Visit the Jack Daniels distillery in Lynchburg. ~ We ticked this off the list in 2008 when we visited Nashville and the surrounding area for Dave's 40th birthday. It was brilliant and I would highly recommend it.

Learn how to hula hoop ~ I have managed to learn how to hoop in one direction although I would very much like to master it in the other direction too!

Walk inside a glacier ~ I have been very fortunate to be able to do this as my lovely sister used         to live in Chamonix and so managed to go inside it every year we visited and it was wonderful.

See a show on Broadway ~ Several years ago The Dave won a competition to New York and            we were lucky to see Phantom of the Opera on Broadway.

AND now to these, they are what I have left to accomplish ~ and only just under 4 years to do it in!

Complete a photography course ~ I had to give up my Reflexology ambitions due to health issues and have always loved taking photos (much to the families frustration) and have decided I would really like to know how to take decent pictures instead of my quick snaps. I have successfully enrolled in a course with the Open University starting in March 2016.

Drink a pint of Murphy’s Stout in a pub in Ireland ~ I have never been to Ireland but mum went many times with a friend of hers who had family over there and raved about it. I have always wanted to go, but never somehow fitted it in. I drank many a can of Murphy's when I was breast feeding (midwife's orders) and loved it so what perfect match than a weekend break (or mid-week, I'm not fussy) to Ireland and sample the unctuous brown liquid in a pub whilst there?

Put £5 in a book in the library with a note ~ I love this idea, I am a huge reader and hate to think that there is a decline in library users, so thought this money and note would make a like minded person happy. I like the idea of putting it in this book ~ rather apt I feel.

Visit Pompeii with The Dave ~ I would very much like to share this experience with my life partner, I went when I was 10 years old and remember it so vividly still, it had such a huge impact on me and hope that it has a similar impact on The Dave. Perhaps we could factor it in as a mini-honeymoon after our vow renewal.

Have a (tasteful) nude photo shoot ~ I want to embrace and accept the body I have after years (well almost a life-time) of being dissatisfied and wanting to be thinner, have bigger boobs etc. I am finally learning that this body has carried me well and seen me through tough times, it needs celebrating, stretch marks, rolls of fat, grey hairs and droopy boobs 'n' all! No idea when I will do it ~ but hope one day before I reach my 50th birthday.

Say yes for an entire day ~ I have a tendency to say "no" immediately and then think about it before then deciding if I want to change it to a "yes". I think waking up one day and deciding to only say "yes" would be a good exercise for me ~ but obviously I won't tell anyone when I plan on doing this as I feel they may well take advantage!

Renew wedding vows ~ This is very important for us because we have changed our  religious views and beliefs since our married days, been through an awful lot and come out stronger, wiser and more unified. First time round we allowed family to organise our wedding and decide on how the day would run. This time round we want to do it our way and involve the girls and celebrate what we have survived and look towards a brighter future together on our own terms. We have already booked this in for June 2016 and are very excited about it.

Send a message in a bottle ~ This really appeals to me although I don't know why. Those who know us know that we spend so much of our leisure time down in our happy place on the coast. I thought this would be a fun thing to do, not sure what message I will send yet, but thinking next summer will be a good time to do it.

Try new foods I’ve been too chicken to have before ~ when I first met The Dave I didn't like so many foods, currys, pizza's etc but now eat them all. However, I am a real baby when I am faced with something new and a coward about trying them ~ so my mission between now and 2019 is to add a list of new foods to my menu.

Collect acorns and randomly plant them ~ I am a huge lover of trees and was listening to an interview on radio 2 about oak trees and the guy (I forget who he was) was appealing to the public to gather acorns and randomly plant them because oak trees are very slow growing yet hugely beneficial to the environment and we need more of them. So that is precisely what I am going to do whenever I can.

Go on a romantic beach picnic with The Dave and sit and watch the sunset ~ something so simple and yet something we have never done. So hoping to do this one summer evening on the Yorkshire coast.

Go wine tasting ~ Again, this is something I have always wanted to experience and somehow never got round to doing. Hopefully I can tick this off before the end of my lifetime.

Let the girls do a make-over on me and wear whatever they decide for the day ~ I have no fashion, I just wear jeans and man jumpers with Docs or trainers. I like to be comfortable. The girls would like to see me looking girly and feminine so I have said they can choose an outfit (gulp ~ even if it is a dress or skirt) and put make-up on me and I will keep the look for the day. No idea when I'll let them do this, but it's one to have for a rainy day perhaps.

Grow my hair ~ I have tried and failed many times to grow my hair. I get so far and then get thoroughly fed up with it looking such a mess that I then have it all chopped off again. This time round I have got further than previous attempts but am at the stage where can only wear hair bands and it looks and does nothing for me! However, I am looking forward to the wonders of cold weather and hat season because I am intent on persevering this time and allowing it to grow and grow....

Go to Comic Con ~ I hadn't realised there was a comic con in Birmingham and so have promised Tasha that one day when we are both well enough we will go!

Make a wish at the Trevi Fountain in Rome with The Dave ~ This appeals to the soppy side of me and would like to tour Rome (before going to Pompeii) and take in all the sights.

Have a professional family photo shoot ~ Before the girls all leave home and fly the nest for good (as one has flown already) I would like to gather us all together and have some lovely informal photographs taken of us together.

Go to a concert ~ I would love to see live bands play and yet again never get round to it, it gets put to the bottom of the list and then when the opportunity comes I decide to stay home as too tired etc. This is something I want to do and so will try and change my mindset and just do it one day.

Buy and keep alive a Bonsai Tree for at least 6 months ~ As I said previously, I adore trees, I find them soothing and beautiful. I don't have green thumbs and have heard keeping Bonsai trees is not easy but really fancy buying one and managing to keep it alive too.

Make Hash Brownies ~ I don't smoke anymore, I gave up in 1996, I have heard that hash helps soothe pain in M.E,. and so am tempted to bake a batch and try them to see if they relieve my pains and aches because normal painkillers have no effect.

Reintroduce date night ~ Don't you find that it is all too easy to come home and just flop, to be too tired to bother? We used to have a weekly date night and then that fizzled out. I think monthly is more realistic and that we should put aside a night each month to go out on a date and remind each other what we mean to each other.

Have a full on food fight ~ this appeals to the kid in me, however, due to the OCD side of me it would have to be outside as I couldn't cope with the mess if it was indoors ~ it makes me twitch just thinking about it, but outside is a different matter.

Have a water balloon fight ~ again feeding the inner child, it would be great fun and perhaps something to do when we have friends over.

Sort out finalising my will - With recent health events it's hit home that you can never be too prepared and we have half done our wills but they really need finishing and so I need to get my arse into gear and do this.

Do a ghost tour/walk ~ I used to always watch Most Haunted and love the idea of going on a spooky tour or walk, although couldn't be too long as it would make me too tired.

Visit a strip club ~ I am curious about what goes on in one of these and whether or not the "strippers" enjoy it or not. I would love to watch a show and chat to the strippers to get a feel of what it's all about and whether it feels seedy or not.

Hold a Tarantula in my hand  ~ I have had a huge fear of spiders for as long as I can remember and someone once told me holding a tarantula is less scary then holding normal house spiders as they are less likely to run up your arm etc. I am terrified at the thought of doing this but wonder if it would help me address my fear (or make it worse). I think someone would have to support me and hold my hand underneath to stop me flinging the spider off though!  I am dreading this one SO much!.

Hold a joint 50th shindig with The Dave ~ as we are both 50 within 11 months of each other what better way to celebrate half way between our birthdays. I wonder about using the fancy dress theme of Film Characters as we spend much of our time together watching movies.

As you can see, I have a few to accomplish  but should be a lot of fun in the process, so watch this space and see how I get on.

~ Blessed Be ~

x~X~x

50 Facts About Me Challenge

Okay, I have been tagged to share 50 facts about me.

So, since the challenge has been accepted and after much wracking of my brain, scratching of head and dishevelment of hair I give you my 50 facts *insert drum roll here*

1. I am a Taurus and yes, I can be very stubborn!
2. I'm a worry wart, I worry all of the time, about everything and anything ~ I can't seem to turn down the worry button in my brain.
3. I am one sixteenth Burmese although you wouldn't know to look at me which is a shame.
4. I was logged in my medical records as being 5ft 10" tall, yet in latter years have been told I am only 5ft 8" tall (where did those two inches go?)
5. I spent 3 years trying to learn the violin and after much gnashing of my tutors teeth I only managed to very badly screech out a version of "Scarborough Fair" by the end of my time with her.
6. I used to play piano but stopped taking lessons after gaining my grade 4.
7. I had ballet lessons until my mid-teens which I loved but stopped after my teacher told me I was too tall and my knees overlapped - rude!~
8. I am tone deaf although would dearly love to be able to sing I truly can't hit a single note.
9. My hair once snapped off due to over bleaching it and I had to have it cut so short that my nursing paper hat was held on my head via friction as there wasn't enough hair to even put a grip in it. I also had a large number of perms during the 80's and back-combed it for added volume then hair sprayed it within an inch of it's life so that there was literally no movement in it.
10. I attended a week long residential cookery course in France, I have the certificate to prove I was there and completed it yet strangely have absolutely no memory of it whatsoever.
11. Since I have been with Dave we have moved house a total of 8 times, the home we are in at the moment is the one we have lived in the longest.
12. I had a severe case of mumps during the long summer holiday before I started secondary school and spent the entire time in bed, miserable, with my entire face and neck swollen - I looked like Moonface from the Faraway Tree! My mum used to mash up melon for me to drink/eat in a slushy format as my mouth could barely open - I have a huge fondness for the sweetness and juiciness of melons ever since.
13. I love eating salt 'n' vinegar crisps together with milk chocolate - I think it's a combo that really works. Talking of food; my favourite sandwich is exceptionally unhealthy -  get two slices of granary bread, spread thickly with mayo, cover liberally with slabs of garlic sausage and then thick slices of pickled onions, then smash on top salt and vinegar crisps. Squash the slices of bread together (as all best sandwiches HAVE to be squashed together) cut into squares and eat.
14. Even though I am well into my adult years I still cut my sandwiches into quarters. I also can't bite into apples for fear of biting into a maggot so will only eat apples if can cut and slice them first
15. I have broken both my little toes on numerous occasions, so much so that they are both rather gnarled and bent but have never broken any other bones in my body.
16. I went to boarding school in Abingdon for 5 years from Y1 to Y5 - but got "asked to leave and never come back" so went to the local 6th form in Horncastle, Lincolnshire.
17. I have an older sister and younger brother.
18. I have known my husband for 42 of my 46 years on this planet.
19. I am a HUGE Terry Pratchett fan and am in the process of buying and collecting everything he has ever written.
20. I don't like Marmite or Peanut Butter - yuck!!
21. I have been many sizes in my life but am finding with age comes acceptance and slowly but surely am beginning to accept myself "just as I am" (although I do still have the odd BIG wobble every now and then).
22. I am stupidly excited with the emergence of each and every new silver grey/white hair and have stopped dying my hair so that I can keep track of the birth of each new one.
23. I have had 5 miscarriages, all boys, at 12 weeks gestation.
24. I have 3 daughters very close together - 15 months between my first and second born and 18 months between my second and third born. I am so happy they were born so close together as they are great friends and extremely close.
25. I have an addiction to "lounge wear" which drives my husband nuts.
26. I also adore man jumpers and always seek out new bargains - again driving said husband nuts.
27. I feel odd and uncomfortable in dresses, I also dislike formal well attended occasions preferring more casual intimate gatherings with just a few people.
28. I am less likely to suffer fools with each advancing year.
29. I am a qualified RGN, Typist and Masseuse ~ although only practice massage on my hubby and girls.
30. Once upon a time before age sought to stiffen my joints I could put my legs behind my head.
31. I am the only person in my family who can't curl my tongue.
32. My tongue is also incidentally exceptionally short and makes people laugh when I try to stick it out as far as I can, truly it is a sad and pathetic sight!
33. I use ! far too often.
34. I get verbal diarrhoea when nervous and end up revealing information which should never be shared.
35. I blush scarlet whenever I pass a policeman looking horribly guilty, I have no idea why.
36. I can't stand up and speak out in public through crippling shyness, I become a gibbering wreck, and my voice literally disappears.
37. Everyone I know who has seen my feet think they are strange and that my toes look like jelly babies (again ~ rude!).
38. I am butt clenchingly, palm sweatingly, nausea inducingly TERRIFIED of those 8-legged critters otherwise known as spiders *shudders violently*
39. I love Tom Jones and Barry Manilow and have been to see them live with my poor hubby (he must really love me) ~ they are exceptional live.
40. I love nothing more than to sing My Chemical Romance songs at the top of my voice and am a HUGE fan of Muse.
41. I love a song called "Cock Robin" the version I have the girls says is just plain weird and spooky and they seriously dislike it (that is being polite) but Dave loves it and we enjoy singing it together.
42. During my first holiday with Dave we went to a place called "Clun" and we got rather merry one night and drove the locals insane by repeatedly playing "Stand By Your Man" on the jukebox and dancing to it.
43. I have a huge love for trees, I have paintings of them and just love being around them because I find them immensely soothing. I would like to be buried beneath a sapling when my time comes.
44. I adore animals, especially our three loopy dogs who bark far more than any other dogs in the neighbourhood and often sets the other dogs off in a round robin of barking.
45. My body is all lopsided, my eyebrows are different shapes, my nostrils are different sizes, my ears are not level so my glasses don't sit straight, one foot is bigger than the other as is one boob.
46. I can't ride a bike without having to fall off to stop ~ coordination isn't something I have been blessed with.
47. I would love to write a book one day, I am a closet, frustrated writer but have no skill or plot!
48. My favourite TV shows are Greys Anatomy, Silent Witness, Breaking Bad and 24.
49. My secret crush is David Suchet, I find him especially weirdly attractive as Poirot!
50. I have one tattoo on the inside of my right wrist which I had on my 41st birthday after the death of my mum ~ it is a St Cuthbert's cross surrounded by 5 stars, the cross is significant for me and represents my mum and the five stars for each of the babies I lost. I am so happy I had it done I find myself gently stroking it when I am sad which weirdly provides me with some comfort.

So there you have it ~ my 50 facts about me. You may find that you have learnt something new about me or you may already know all of the above.

Thank you for reading and see you again next time.

~ Blessed Be ~

x~X~x

Life In The Mawer Lane

Howdie folks, how's your week going?

We've had a funny old few weeks, there's never a dull moment in this house and again ill health has been at the forefront of our lives.

For those of you just getting to know us we're quite the functional dysfunctional family with each of us having our own issues.

Both myself and The Dave suffer from depression and stress, which, for the Dave, was compounded by three heart attacks in December 2014.

Then we have our first born child who suffers from Generalised anxiety disorder (GAD), Panic disorder, Post-traumatic stress disorder (PTSD), Major depressive disorder (MDD), Dissociative Identity Disorder (Multiple Personality Disorder), and Autism and ADHD.

We move onto second born child who suffers from moderately severe M.E.(mostly house/bed bound with odd bouts of energy allowing outings mostly with wheelchair or crutches), Hypermobility (dislocates very easily), digestive issues, severe anxiety, severe depression, Trichotillomania, Dermatillomania and Dissociative Identity Disorder (Multiple Personality Disorder) and Orthostatic Intolerance.

Finally our youngest child has M.E., anxiety, irritable bowel, inability to maintain weight and so is underweight and investigations on-going to discover what she is failing to absorb requiring regular dietician input for supplements and Orthostatic Intolerance.

So you can see, we're quite the messed up bunch but somehow our abnormal feels normal for us and we usually manage to cope with everything that throws itself at us.

However, the past few weeks have been very trying for us all and our youngest became ill with what we are assuming is a nasty viral infection BUT getting that on top of ME meant that it affected her heart and made her very unwell resulting in our GP sending us to A&E.

Thankfully her heart trace was clear and we have been told with her being underweight with ME any infection could potentially cause her heart to react in the future and it's something we will have to observe.

She is currently suffering from the mother of all headaches on top of many other symptoms (although meningitis has now been ruled out) - it's now been almost 2 weeks without any respite from it and so we are having more blood tests (one to rule out Glandular Fever) as well as routine ones and seeing optician to look at her eyes tomorrow. She has a very high pain threshold and as a mother seeing your child in pain 24/7 is highly distressing. I am in awe of her and how she is still able to maintain her humour and determination (attending online classes with eyes shut and just listening so not to miss them).

To add to that second born has been fighting an enormous battle with her mental health demons and hopefully we can find a way to address that and are waiting for an appt with her psychiatrist to look at what we can do differently to approach this.

On a positive note our first born will be moving into her new home tomorrow ~ we have bought a house for her to share with a few others in the centre of town so an easy walk to University in September and just round the corner from where she works. Tomorrow will just be odds and sods, taking the necessities she needs and the rest will be transferred over throughout the following week. We will also, much to her delight and our dread, be having to visit Ikea to purchase a new bed and other bits and bobs that she needs. What is so lovely for us is that she is an adult now and will have her independence and own place to live but also close enough for us to pop over with food parcels and go for a natter and coffee.

Thankfully the rain seems to have stopped and so hoping to crack out the BBQ this weekend and enjoy some alfresco dining.

Also, thrilled to say The Dave managed to rescue a nest of bees from a loft and relocate them in our garden (where all my plants are bee friendly) their nest is by our greenhouse with a bin liner round it to keep warm and they bees seem quite happy there which is a relief.

They aren't honey bees though because if they were we would have brought in someone to help us who knows how to safely relocate them into a hive. Although we did have one in our kitchen that seemed a little weak but soon perked up after some sugar water and flew off again.

So, hoping that our next few weeks will be quieter and that our issues will find some respite and solutions will come forward to ease the strain.

Wishing you a great weekend whatever you have planned.

~ Blessed Be ~

x~X~x

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!

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.

~ Blessed Be ~

x~X~x