We Will Always Have Paris

      So things in our household have been ever-changing. Sometimes it’s really hard to keep it all together and just keep up. This last 2 months alone, we have had work in the kitchen done, a minor surgery op (non HD related) which went terribly wrong resulting in a trip to the emergency department and a 3 night stay for my husband, following a post op infection and 2 weeks of daily dressings. Thank God I’m a nurse because that’s exactly what he needed right now. (Cheers for that one, life it was a cracking edition to the month of November). I have also had news of a death of a young close colleague of mine all whilst balancing a very very busy community matron caseload. I have also been supporting a group I set up with our league of friends - it’s a coffee hub drop in signposting group for friends, relatives or people with long-term conditions - we raised £80 at our annual Christmas coffee morning a good result for us all whilst being harassed by my daughter's school PTA guy to offer support with said up and coming Christmas fete: "It feels good to contribute" he tells me!!! #clueless!! At this point, I'd quite like to contribute to my own wellbeing this year -however that is an ever depleting project that I’m trying to claw back.

      Anyway, we decided in order to give my husband some good memories with our daughter, as he is at present well enough to enjoy time with us, we booked a trip to Disneyland Paris. Woohoo!! The bright lights and eternal happiness that Disney brings is really something that we all craved but I guess in reality life really isn’t like that. We had a lovely trip to Disney is my response to the outcome of the holiday - mostly we did (coupled with mostly because that’s the bit people only want to hear, so they can feel great about asking about my husband and leave feeling happy with only the positive details). However, the look on my daughter’s face meeting Snow White and eating Nutella-filled pancakes for breakfast was truly a delight, mixed with the joy on my husband’s face, with us all on the rides together and eating out every day is such a pleasure of a memory to hold on to.

       However, Disney is very tiring and has been taking its post shiny toll on my husband and I especially with the busy run up to Christmas imminent. We made some lovely memories and took some lovely photographs but underneath the joy of a smiling picture is the reality of how hard this is. It peers through like a sunbeam shining through a bedroom window under a partly open curtain. As tiredness takes over, my once very energetic husband is in a place which makes him feel low and knocks a staunch sense of reality into us that he actually is getting worse. The twitching movements, which aren't captured in film, are exacerbated in moments of tiredness ever creeping in on a daily basis. This has become less bearable for us both to deal with. I notice now how my husband sits alone when out socially or on his lunch break as he can’t always keep up with very busy social situations; every time my heart breaks further as the very outgoing sociable man I know and love takes a further step along that road I can’t prevent him from going down and I have no idea in these fleeting moments if I can bear to stay and watch, watch the man I love so dearly be broken down so slowly so cruelly both mentally and physically. I watched this with my mother who died of secondary progressive MS. At 38 and 11 years after her death, I can truly say I have never truly recovered but then no one ever really does do they ?

      Living with a broken heart is a path I prayed life would never take me down again. However Christmas 2018 is on the horizon and Christmas for me is a time for hope and appreciating all the things in life that I’m thankful for. Despite all of this, I remind myself how so very grateful and lucky I am in life to have had the gift of endless love and support from such a great husband and to know I have friends and family who are tirelessly there to hear my woes of yet another shitty day.

 So this post is to them: my life heroes, the ones who take the time to really listen and who just get it, the ones who are not full of empty offers but just turn up and help without having to tirelessly ask because they know I hate accepting help, the ones who bail me out when I’m starting to sink even when I haven’t realised yet that I’ve started to drown. For that, this year I am truly thankful.

I'm fine, thanks for asking!

       Why ask?! When you care for anyone with illness, it seems at first that everyone is of course very concerned about the said person, half of which will actually offer support but then half again will actually follow through and be there and visit. My God, I adore these people in life they are my heroes. They take the time out of their busy lives to just treat you normally and actually care and ask and visit and offer without giving you the guilt of having to actually ask for help. They don’t pretend to get it but they do remember your favourite Chinese dish and know how excited you would be over a latest product they picked up for you because only you’d get it. God they remind me who I am and I cherish that over everything. I am so lucky to have handful of people like this in my life...

However, the other 75% of the population of friends / acquaintances give you the:

"Hi how’s your husband? And daughter?", the passing by concern.

Of course, I always reply: "oh they are fine thank you", followed by them saying: 

"It must be hard" and me saying ‘yes it is’. 

They bid their farewells and off they pop out into the world feeling great because they actually asked and feel better for it.

      Now I don’t mean to sound like a cow here but HELLO !!!!!!! I am not only here but I am an integral part of this situation. A genuine "how are things with you?" on occasion wouldn’t go amiss. I work to pay all the bills, I care for my hubby and daughter whilst balancing not one but x2 very complex diaries, I clean my home and mow the lawns and balance the books, I ensure I spend quality time with my family and I help my daughter with her homework. I cook from scratch mostly 7 days a week whilst trying to fit in a couple of runs weekly so that my new found food addiction to cope with life doesn’t end up with me having heart disease and Type 2 diabetes - I am clearly not one that can be out of the game at this point. I also have to cancel nights out with friends I know sometimes I let them down because despite working my ass off my family need me and I don’t always have spare cash!! I’d rather none asked than just being emptily offered a "how are you?" because 9/10 times they just don’t want to know or are fishing for gossip.

      Generally I’m ok - thanks for asking. Some days I’m shit when you ask but I know you don’t really want to hear this and I hope you never ever have to deal with half of this. Just please do not give me the ‘look’ or the patronising ‘pity voice’, I don’t want or need it. I’d rather you just crossed the street because in fact I’m a busy woman. The whole illness process has in fact ensured I have a life filter. I no longer have time for the sympathy crap or the fair weather friends who are just around for the good times; you are either in it or out. I really don’t mind but dear god pick a side because our life is too precious to waste and I really just want positive people in it, who want to be there and if you don’t want to then that’s all fine with me I’m so good with that and I hold no malice towards anyone, trust me this shit is as hard as gets it!! Just please don’t ignore me or ask me how I am out of guilt or for gossip I just don’t have the energy for life drains anymore.

 This one is for me # youdecide #life legends #herestothat 25%ilove youdearly

The Chunk - #Fat Rant

Well since all this started I can truly say that my perceptions of what someone who experienced full life burn out looks like were somewhat skewed.  The visions of a frail, pale, washed out person who has lost a great deal of weight due to huge amounts of stress is certainly no more in my thoughts.

For the reality of my experience is 14lb heavier - for those of you who prefer kilos that's about 6.5 kg -  the appetite of 10 men and habitual comfort eating to take away the darkest moments when I just needed a fix to cope!! Yes to top the year of sadness off, I have now entirely self inflicted myself from being fat and sad, to now no longer as sad just fat; I mean the latter is still better. Dear goodness, what was I thinking?? Like half a packet of Pringles, endless bread and a tub of Ben and Jerry’s most nights with very little physical movement. What did I think was actually going to happen? And how on God's Earth was this process going to help?

My beautiful French Connection dress has not been taken out for ages as it no longer fits over my now ever expanding hips and ass. The endless tea and cake I have been consuming in my darkest days with kind and loving friends – I should have just taken the chat!!! So not only has this year been totally pants but now I have clawed myself up from the black hole I was in, whilst resettling back into work ;( all be it in a larger uniform!!) I now have to do this shit on 18 Weight Watcher points a day with the whole non understanding world saying just have a little bit of... !!! Good God I wish I was one of those people who dropped 18 pounds (8 kg) and goes all gaunt, trust me it's far more socially acceptable.

So here goes my attempt to not only smash our life but to do it all on 18 Weight Watchers points a day – dear God wish me luck I am going to need it and then some more!! # ourlifeinhd #mentalhealth #greedybitch #getting it together-ish # thisgirlcan-hopefully

Dedicated to my beautiful friend Caroline who has managed to cope with life and x2 children and still remain slim and just beautiful inside and out; (whilst dealing with my fat rants over the years – I bloody love you always x) #inspirationallady #lifegoals

(Image from PublicDomainPictures.net)

The Veil of Mental Health - Part 2 The Recovery

      So when you have hit the bottom getting back up really isn’t as easy as it seems. It’s almost like living an out of body experience. One where you're told by others that it’s ok not to be ok, that you’re doing great and that no one would cope as well as you. It’s in that exact same moment that a resounding voice in your head tells you:"I told you you’d mess it up, I knew you were rubbish and that you would fail". It is feeling those emotions coupled with the overwhelming responsibility for the emotional well-being of your family’s mental and physical health: providing financially, whilst holding down a stressful career, trying not to lose our home and making all the decisions on a 24/7 basis from now on and being terrified: "what if I get it wrong!!!" The depression and anxiety aspect quietly grows and visits you like a thief which inevitably then steals your self worth and confidence. I did not think this would ever happen to me, nobody is immune.

     So how do you go back? Well the answer is that there is no going back. The broken shell of the woman who entered that GP practice 4 months ago thinking that she needed a week off because her memory was going; the woman who had not slept for more than 4 hours a night for a year and was sure that the chest pains and frequent illness was just due to tiredness has gone. All softened with the antidote of time which I had wholly underestimated! The need to stop and be allowed to just recover and to not be everything to everybody 24/7. I was trapped in a cycle of non-stop relentlessness, a machine of ongoing 24/7 productivity. I was smashing it... so I thought. I had to stop and now I give myself time each week to just do that. This is the only way forward. This was and is still really hard for me. I am still learning that it’s ok to just be on my own and just do nothing. Today I am not cleaning, not shopping, not sorting my daughter's clothes, not reading work journals, not checking emails, not making dinner, not checking up on my dad who has been very ill this year (he can ring me if needed). I am not mowing the lawn or painting that fence!! Now right now I can just stop, and before I really did not know how. You see, you just lose that and the irony is stopping and doing nothing makes it all much easier and clearer. Drop the guilt. Drop the guilt of not being there  and the guilt of not being at work. I mean my leg hasn’t been hanging off so surely I should be at work right?? I needed to drop the second guessing of what will people think? At work or at the school gate.. I mean surely after 4 months I’m ‘better now’. Let it go. The impossible self expectation of one’s self to be wonder woman and stick to a low calorie diet and look like a model and be a domestic goddess at the same time as dealing with my husband’s HD diagnosis coupled with anxiety and depression - why can’t I do this?? I am not a lazy person!!...

      I no longer expect anyone to not only achieve this but I do not expect this of myself. I have been terrified to the core and this has been by far one of the toughest challenges I have ever faced; trust me that has taken some beating. This takes time, all of it. I experienced 18 months of destruction and trauma, in hindsight all of this could not have been repaired in a week. So when people look at me now and I’m sure they do and think ‘wow she’s had a lot of time off’. ‘She’ has taken what was needed to physically and mentally repair a broken body and soul, not one day more or one day less than was truly needed. The terror of going back there is enough to want to protect myself in the future; I do not want to go back to then. The place where the TV and radio was just too much to handle. The place where the first 6 weeks of my time off I don’t remember. At month 4 I’m so much better but I am not there yet, but the difference is now I’m not sorry. Let people in. I had to let people in, I still don’t really want to, but true friends want to be there as I want to be there for them so I’m learning how. I have felt humbled and grateful for friendships made in the school playground on the school pickups  all of which up till now I’ve had to miss out on. I have gained a different insight into other people's lives and problems and it has been a much needed distraction to gain perspective and build supportive networks. My dear long standing friends who have been honest with me and have forced me out of my home and plied me with wine and crisps then made me laugh until I have felt sick. I had also forgotten how laugh and I am just learning this again now and to be ok doing it. I am actually very blessed to have such amazing people around me and it has taken all of this to realise that I am not alone.

      I am very fortunate that I have an employer who hasn’t pushed me back into work too early. I’m unsure if they truly understand the journey that I have been on and that I’m still working through. I have still felt valued by my team and supporting professionals which makes it all much easier. I realise that a lot of people do not have this in their life and my heart truly goes out to them as the Veil of mental health is dark and is not easily lifted. My life with my family and those moments where we had a water fight in the garden, ate chips on the beach, cheered when my daughter could first operate a big girl swing and then swam on her own in a pool so deep, is now what drives me forward. Not staying at work late until everything is as perfect as I can make it or doing everything so perfect making me so tired that I can barely think. This time has allowed me to really start understanding and living in the present, this is all we really have. Learning to deal with the grief and deterioration is something that I find hardest about living with HD. This is also a time thing I am learning to cope, all be it slowly; the difference is now I am allowing myself to take the time I need to do that. I hope that my ramblings of a blog helps others to see this in themselves too because you aren’t alone out there, but you do need to let people in.

This post is dedicated to my GP who made decisions for me when I couldn’t. Her understanding and patient kindness saved my life in more than one way. I am eternally thankful.

The Veil of Mental Health – The Beginning # Part One

      I am a wife a mother and nurse. I am also an independent woman who grew up as a child carer for my mother who had secondary progressive MS. I guess as a result I became just so very self sufficient. My mother was a very independent and fun, she had a kind warm loving soul and as a result she had lots of friends. She had an academically brilliant mind and a zest for living which she passed on to my brother and I. She displayed utter unbelievable courage which she kept until the very end; how proud she should have been. After her death in my mid twenties I was now not only ready to take on the world but strive to make it a much kinder more patient place, perhaps subconsciously this is why I may have chosen nursing as career.

     The slow and painful degeneration of illness is something that has always haunted me and is something that the soul never really recovers from. Death is not worse than this. I met my husband in my early 20’s, he had the pleasure of knowing my mother and I his. We did not know each other’s mothers well due to the way in which their long term conditions developed. I knew. I knew that my husband had a 50/50 chance of developing HD but that young naive heart was about a girl who just fell in love with a boy and nothing else really mattered. He was and still is so very handsome and has such a kind heart which is something I am so truly grateful for having in my life. We got married and had IVF PGD, (PGD- gene elimination to ensure our daughter had less than 1% chance of developing the HD gene). Our daughter is now a really fun, smart, clever 5 and a half year old who makes us leap out of bed in the morning, the girl who has filled our life with such joy  for which we are eternally grateful.

     My husband was diagnosed with HD a year and a half ago. Consultants and nurses tell us it’s ok as it’s a very slow degenerative condition. I feel that has little or no comfort to me knowing that my husband is now on a path that is leaving me physically and emotionally in the cruellest way. As a nurse this fills me with complete fear and I probably hold far more knowledge than is required at present. Over the last year things have become very tough. My husband went from being a very successful manager to him now being back on minimum wage as a result we live under the constant threat of nearly losing our home and the pressure upon me has increased considerably. I spend each day watching my beautiful husband degenerate watching as his brain slowly destroys bits of him physically and mentally. I watch as he struggles with sleep and the effects that has upon his physical symptoms and it breaks my heart every single day.

    As a working mum it gets tough. I have up until now been working full time, (incidentally as a nurse who specialises in long term condition management; contrary to belief this is not helpful), looking after my daughter, supporting my husband, supporting my father who has had cancer x4 this year, coupled with the constant threat of nearly losing our home and completing further degree modules whilst managing a complex community caseload. It’s very fair to say that my Wonder Woman crown has somewhat slipped. All of this took me to a place I thought I was immune to: a mental health breakdown. I have always considered myself as a glass half full type, certainly not ‘depressive’. My best friends always refer to me as a Tigger type bouncing around with endless energy ready to start new adventures, believing that anything is possible. The last 18 months have truly taken their toll. In March I went to see my GP a crumbling shell of a woman. For me the stigma of not admitting that you just can’t take anymore I found and find embarrassing.  The "I am a nurse and I cope with everything", the ‘we don’t go off sick’ mentality had taken its hold. I don’t remember much of March and part of April if I am honest. I remember just sitting in my lounge and not being able to cope with the TV, the radio, even my cats purring. It was as if it was all just too much. I had marched on since my husband’s diagnosis and not even begun to process the wider implications of a result which was positive to HD.

    Life just kept getting tougher, the hail storm I found myself in had started to become boulders. I can only describe it as like being hit by a truck at 5000 miles an hour and being tossed into the air, like an out of body experience just travelling until you finally hit the ground and realise that you can’t get up. The thing that strikes me is the grief of living with HD. It’s like a thief that comes and takes me in the middle of the night. It can sometimes hit me in the early hours of the morning when I’m making a cup of tea because I can’t sleep, yet oddly it’s at its worst when I am just for example at my daughter's sports day. I see my husband cheering her on knowing in my mind how tired he is and how this may be the last time and memories we both have of him well. It’s in the moments during my working day when I am in a meeting and all of a sudden I feel the wind being taken from my chest unable to breathe and feeling that I just need to run. The grief for the hope of children that we are now not going to have, the siblings we will never be able to give our daughter. For the mum of 3 I always wanted to be. The grief for my daughter who will have to live through this with us and the ability to know I am powerless to protect her and my husband from what is coming. I can do nothing but be there and be strong and I worry that I am not enough or that I will make a wrong decision. The grief of those missed moments. My husband and I know this one just so well: our wedding day, the birth of our child, all of which are likely to be taken from him and I can do nothing to mend their broken hearts. The last grief is a very selfish one. What about my broken heart? My life, my wants and needs which have now been completely swept under the carpet. As a carer, I will go back to being invisible and it’s likely to be years before anyone actually asks how I am with genuine regard. My friends and most people my age are having kids, progressing their careers, going on holidays (which we can no longer afford) and again I will be in a boat where I have very little in common with them, our lives moving in different paths and inevitability I realise not intentionally I am sure to be left behind. I am left waiting to live my dreams again after my husband’s gone, IF I make it out alive this time. #selfishcow!! No one wins.

      I want to make very clear how lucky and how very very proud I am and how fortunate I am in life to have such a loving husband, daughter and friends. For me, this is the second time around as a carer and I would be lying if I had not thought about getting up and running away because I really know all too well the road this leads to. It’s tough and hard and comes with so much sacrifice which I am not ready to give. I am not ready because I haven’t healed from the last time. Yet here I am on that road starting to feel well again and with that love I feel for my family I will move forward with the strength I’m not sure I have because love is just like that. It takes you to places that are limitless and pushes you to places that you never knew you were capable of. I wanted to take these moments to maybe practise what I preach. Daily, I deal with people during their most vulnerable moments, trying not to sound too cliché "it actually is ok not to be ok". I no longer expect anybody else to get it; this is not their path to understand. I no longer feel I need to give any explanation. I have been off work for a while which I feel terribly guilty about. Time really is helping to heal the events of this last year and I am learning to open the gates to allow people in who want to be there. This is possibly the only way forward. I want to protect everyone from this and I simply cannot. For a self confessed control freak like myself, this I find is the toughest. I mean who really wants a life relying on everyone else?? I know my husband is feeling the same. I guess this is something we are going to have to get used to and accept.

    This post is for my dear friend Lucie who without realising probably rescued me with her tales of #Fencegate and reminded me of normal everyday life which I had forgotten about beyond HD.

The Pub Landlord

 

So it all started out with hearsay, as these things generally do. My dear husband was diagnosed with HD a year ago and it’s fair to say for him exhaustion and sleep deprivation comes along with that. This when he tires can trigger physical symptoms, poor balance, jerky movements and slurred speech. Whilst at the moment I realise that this is only early signs I do find it rather difficult to watch. The odd comment in the school playground about my husband not ‘looking right’ or ‘yeah he looked a bit drunk’ I guess is just something that I’m learning to live with and to not take to heart as we will not hide away in the shadows of disability for he is such a kind wonderful man. So my husband’s best mate tells me on the phone after a good night out at a gig with his mates that that they went to a local pub afterwards. They had only had a couple of drinks but as with these things of course my hubby's balance and speech inevitably became a little more wobbly than usual, all of which his good mates are now becoming accustomed to!

The story first hand from his best mate (who I may add wasn’t there) went like this:

They all go to enter a bar after the gig on a maximum on one/two beers (no one was drunk). They arrive at the door of a pub where the bouncer tells my husband in not so polite terms to ‘do one’ as he's drunk. All his mates of course take umbrage and explain calmly about his physical condition which the bouncer dismisses immediately. All his mates say don’t worry mate to my dear hubby and leave quietly and head to another bar where this was not a problem.

 Life has a way all of its own about really showing its participants that there really are a few very good friends out there who completely have your back. Thank God for them!! The rage when my hubby's best mate informed me of this. I was so so very upset because my husband had not told me as he very much tries to protect us from it all, when really we just want to not be protected, but then I guess that’s marriage right?? It was at that precise moment that I decided to take matters into my own hands. Upon the moral high horse I rode like a knight charging into battle into super protection mode of my best friend/ life hero. Forward I went phone in hand as my weapon of choice to the bar in question and security firm manning that bar defending my husband to the hilt. Words were thrown like ‘disability discrimination act’ and ‘what sort of training do your staff have?’ And ‘can you imagine how you would feel??’ all of which they then vowed to take very seriously. As a mother and a wife it really is instinct I feel to protect my family so that I felt justice had been served.

It was a few weeks later when my hubby and I got a last minute deal for cocktails and dinner when we started to discuss the last year and how awful it had been since diagnosis and with also managing other family illnesses. With a tear in my eye we spoke about some funny moments that had also happened. It was at this point I said to him that I knew about what happened on his night out and how upset I was that he felt he could not tell me himself and that when his mate told me that, I couldn’t not take action... There was quite a long pause followed by complete laughter from him which then set me off too! It turns out that whilst drink does bring on his symptoms and they were exacerbated that night due to tiredness he had also had 8 pints of beer and the pub rightly hadn’t let him in which is why he had not told me !!!

 So the moral of the story I guess is maybe it turned out on this occasion that life at the moment hasn’t changed all that much right now. I have learnt that one thing is for sure: illness or not, I will protect and defend my beautiful family to the hilt. Whilst I struggle with not being able to control any part of this disease process and the impact it has daily on our family I’m still hoping that we have many fun times to look back on. Knowing that life is so precious and fragile makes me lucky to have such a great life best friend to share it with x

(Apologies to all staff in said bar and security staff who may have been affected by my grief stricken moments in living with HD)

Image from OpenClipart.org (public domain)