Blog

  • Parents sticking together

    Being a parent of a child who spends a lot of time in hospital, I’ve met some pretty amazing people.

    Some have children born with conditions, like Lewis, others have acquired conditions as the result of illness or injury.

    Irrespective of how your child came to have their diagnosis/illness, it is a tough, long road that can be, at times, isolating and lonely.

    Time and again we are reminded of how individual our children are and how you can not compare one to another.

    I”ve met some really amazing people, all who have faced such stressful, hard times.

    Ive learnt so much from others and have faced tough times but had such support from those Ive known forever and those Ive not long met.

    I want to say to all those mums & dads I’ve met along the way that you are all amazing. You have such huge hearts and your children are so incredibly lucky to have you fighting their corner.

    Believe in yourselves and all you do. Noone can do a better job than you!

    I will always be here for my friends, new and old, will hold your hand/be a shoulder to cry on/an ear to rant in whenever you need it.

    Most of all thank you for being there for me and for giving me the strength to keep fighting

  • Windmills and Butterflies

    think my hubby may throttle me soon. I think he’s beginning to hate fairy lights!!!

    My youngest son loves lights and windmills etc so I am slowly but surely filling our garden with windmills, wind chimes and lights.

    Family and friends are helping me build up our sensory collection much to his annoyance (I think he loves it!!)

    We’ve installed a 1.8m curved water wall, lights around the gazebo, brightly coloured wind spinners and wind socks, swinging birds, bunting, rotating chimes, colour changing lights

    The garden is our happy place. We had a wonderful BBQ yesterday for L birthday and the weather was glorious.

    Chimes rang in the breeze, the windmills spun, assisted by small hands as well.

    Lights up as the darkness set in making a beautiful quiet haven from everyday life.

    I need to add to my collection of decorative lights though. We’ve got dragonflies, butterflies, flowers, an owl, birds and I think we need more!!! Lewis lies mesmerized by the waterwall and under the chimes and wind spinners.

    I

  • Kindness When Least Expected

    I’ve got a cousin who lives not far from me and we meet up here when we can. In the past we seemed to meet up only once every few years due to life and family and work commitments.

    We have started to see each other more regularly and it’s really brightened me up.

    Now since I came out of hospital she has constantly asked if there is anything she can do to help improve mine and the family’s lives but I’ve always said it’s ok, we’ll find ways round things like we’ve always done.

    Well after much nagging (in a nice supportive way ) we have permission for her to find a way to help get things done or sourced in a bid to help us out.

    Well to my surprise she decided to set up a gofundme crowd funding page to try and raise us some extra funds to get what we need.

    At first both Paul and I found this a bit awkward. It’s all well and good raising funds for L and his complex needs. His equipment is costly and rarely funded by the NHS. To raise for me and the family is a whole new ball game. No-one would support us. People have their own financial commitments and don’t want to help us.

    How wrong was I??!!

    In 5 days she has raised 3/4 of her target and I still see donations floating in each day.

    I’m absolutely blown away by people’s generosity and kindness towards us. We’re just a family who is plodding along. Yet there are kind amazing people out there who care enough to donate a little to help.

    I don’t know how to thank my cousin enough for trying to find a way to help us out.

    Thank you my lovely.

    You’ve no idea

  • A hidden gem in the NHS

    I am an incredibly lucky person to live in the country I do as it has a health service that is accessible to all.

    So many people slag of the NHS and it’s waiting times, delayed operations and queues in Accident & Emergency but me, I cannot find fault with a service that has been dedicated to my son and also myself.

    I cannot tell you how many times I’ve spoken to an #NHS ambulance call operator when I’ve needed urgent assistance with Lewis, they are calm, collected and reassuring when you feel your world is crumbling around you, filled with fear.

    I cannot tell you how many #Paramedics and #ECAs we’ve had in our house. Proud in their uniforms as they helped not just Lewis over the past 10yrs but myself as well.

    Their attention to detail, methodical working and caring natures have always shone through and made the scary times more bearable. Holding your hand when at your most vulnerable can see such a simple gesture but has the biggest affect.

    From arrival at our local hospital we have never been treated with anything other than courtesy and respect. Yes Accident and Emergency is busy, yes you have to wait your turn but everyone is treated equally.

    #Nurses work their socks off running from patient to patient making sure each one has the medication, equipment that has been prescribed by a #doctor, comforting patients and relatives, being by families sides when times are at their toughest. Doctors treating patients from minor ailments to life changing injuries alongside the nurses. Making critical decisions based on examinations, scans, verbal & physical information. Trying to make all they see better which isn’t always possible. #HCAs standing side by side with nurses and doctors carrying out observations and assisting with procedures.

    #everypatientmatters there is no discrimination, everyone is as equal as the next person to be seen.

    You can see how hard the staff work to cover shortages in each role, everyone pulling together, even the grabbing of a biscuit as they run between patients, or a quick swig on a water bottle to give them a little extra boost when they’ve worked through their breaks.

    They get screamed and shouted at, verbal and physical abuse but they are there for us, you and I and my little boy.

    It isn’t acceptable at any level for #NHSstaff to be subjected to the torrent of abuse they receive daily. From the call handlers to the ward staff no-one should get hurt, physically or emotionally for helping you.

    Yes there are times I’ve shouted at my son’s doctors but never in malice or intending to be nasty. I’ve shouted to get help, to ask for answers to sometimes unanswerable questions, in frustration when I’ve felt something more could be done but I have always apologised, cried in embarrassment at my lack of control and in sadness that I had to rely so much on people I may never see again.

    With Lewis we’ve spent months and months on the hospital wards. We’ve seen Doctors, nurses, HCAs, ward clerks all dashing about, not stopping to ‘catch a break because there just weren’t enough of them for the number of patients. I’ve watched them cry when told sad news about a patient and I’ve watched them celebrate birthdays and ends of treatment and laugh with families. I really have had a lot of laughs through very difficult situations and emotional times, I’ve given many a soggy shoulder from constant tears.

    When sick myself, staff sat with me whilst I came to terms / absorbed the information that I had a spinal injury caused by my own body attacking itself.

    They gave me time, even though another patient may have needed to be seen, sometimes asking someone else to sit with me whilst they saw someone else.

    Their support was invaluable to me. It meant I could ask questions, digest everything and prepare myself to talk to my family members.

    The #NHS is in my eyes the most important part of my families life – they have given and continue to give us time together with Lewis whilst helping us manage his extremely complex conditions, they got me home to my family by getting me into an NHS Neuro Rehab Unit for support and treatment .

    Next time you see blue lights flashing on an ambulance that’s parked blocking your way, remember that someone just like you is being cared for by someone who has probably not had a break, is an hour over their shift and is ultimately giving their all at the starting chain of NHS treatment.

    An incident in my own home area really upset me this past week. 2 teenagers took it upon themselves and dial 999 and report that a young girl was in cardiac arrest. As expected an ambulance was sent with a paramedic and an ECA to go and help this sick young lady.

    On arrival they were hit by a barrage of objects from an upstairs window and had to take refuge in the Ambulance. A HOAX CALL! That is one ambulance that could have been assisting someone who was genuinely sick.

    This disgusted me and I feel for the crew and for the call handlers that took that call. The concern for a young girl was all that was on their minds when they received that call yet it was for no reason.

    I will never be able to come up with enough words to say #THANKYOU to each and every member of #NHSHEROES that have crossed our path. Every single person has played their part.

    #THANKYOU #SouthamptonChildrensHospital #UniversityHospitalSouthamptonFT #SolentNHSTrust #PaediatricMedicalUnit #SouthCoastAmbulanceServiceNHSTrust #nevertakeforgranted #luckytohavetheNHS #HappyBirthdayNHS70

  • Mental Health Awareness Week

    It seems quite appropriate that last week was #MentalHealthAwarenessWeek. Mental Health is a subject that as a society we still shy away from talking about it and it continues to be as big a taboo now as years ago.

    Yes the Royals and all these celebs are putting their names to all the #MentalHealth charities but I personally believe that the real picture is being hidden behind the faces of the general public and that every face hides a story of differing proportions.

    I will put my hands up and say that I am one of those faces. I have suffered with depression for many years and with GP support it has been well managed yet in the past few months it has escalated and now my levels of depression are higher and my anxiety levels have reached a peak.

    It took me a long time to face my mental health issues head on, for so long choosing to ‘put on a smile & brave face’ and pretend that whilst fighting such an enormous internal battle, everything was ok. I’ve always had to come across as stronger than I actually am.

    Through all of L’s battles I have felt that I have had to be the brave/strong one and support the emotional needs of all those involved around us.

    Now whilst that may seem to be my perception of my role it isn’t necessarily the case. My husband has had to hold a job down, look after A and now be a carer to me ( despite neither of us wanting this to be the case)

    Since becoming wheelchair dependant it has been harder to keep my mental health in a good shape. Whilst being deeply scared and anxious I have felt like I have to hide these overwhelming feelings and fight on for the sake of everyone else.

    Since February and coming home I’ve had real issues trying to keep everything inside. I’ve had to be upbeat, positive and strong for everyone, show them that I’m not letting my condition win.

    There are some major things that are making my mental health spiral into what now feels very out of control.

    • Every day I watch my youngest son be cared for and comforted by his carers, cuddling him when he is upset whilst all I can do is watch from a distance on the camera over his bed.
    • My eldest son treats me with a serious lack of respect, attitude, hurtful words – I know he is 12 and hitting that wonderful teenage era but the majority of his attitude, aggression, frustration gets aimed at me and my inability to be a proper mum. He makes me doubt my existence as a mum, the one thing I grew up aspiring to be.
    • I have carers myself now and having to rely on someone to carry out basic tasks, washing myself, cooking for the family but most of all having to give up my independance has really hit me, like a huge slap in the face.

    In fact if it wasn’t for one of my carers I wouldn’t be writing this post now. No I don’t mean I would have ‘done something stupid’ – please don’t take that as me belittling the desperate measures some people take to get on top of/get rid of their emotions. At Christmas I lost a friend from my past after she took her own life after being bullied.

    What I mean is that without talking to this particular person I wouldn’t have faced up to my issues and made an emergency appointment at my doctors. Them opening up to me about their own personal struggles when they saw me at a very low and vulnerable point, got me talking and because they actually understood how I felt, I was able to take the necessary steps to get the help I, now clearly, needed to take.

    The duty GP was absolutely brilliant. I must have looked a pathetic mess, sat shaking in my wheelchair in their room.

    Once I managed to speak I was able to tell him about my anxiety attacks before leaving the house for any reason, my inability to sleep due to crying or panicking about things out of my control like which carers were coming in/would L be well enough for school/how would I get to an appointment/why won’t people visit/i don’t want people to see me like this/ why can’t I lose weight.

    All speeding through my head making me cry and shake.

    Every day between care calls sat panicking and crying about things that seems so trivial and unimportant.

    I know I have the most amazing family. I love each of them unconditionally but how come I feel like I just don’t belong here. I just can’t seem to shake the feeling that there isn’t a role for me anymore.

    I get anxious when I have to face a stand on the rotunda ( I do this a minimum of 6x a day). I’m currently sat in the bathroom wondering why I’m sat here as i can’t remember and I’m stuck to my chair shaking stupidly and getting stressed about how I must look to my family and the various carers.

    One massive thing that happened today was that I spoke to a psychologist/psychotherapist from the Steps2Wellbeing service where I live

    The Steps to Wellbeing Service is a free, confidential, NHS service for to people aged 18+. We provide a service across the county of Dorset and in Southampton for people registered at either a Dorset or Southampton GP surgery. As an IAPT service we accept self-referrals by web and telephone.

    We offer a range treatments for people experiencing problems with low mood/depression, anxiety, stress or other common mental health problems. Some of the problems people might access our service for include:

    Depression and low mood

    • Problems with anxiety (including Social Anxiety and Generalised Anxiety)

    Obsessive Compulsive Disorder (OCD)

    • Post Traumatic Stress Disorder (PTSD)

    Specific Phobia

    Panic Disorder

    Stress

    Even in the seemingly short 45m assessment phone call I suddenly felt that someone understood. Someone who didn’t know me, who didn’t judge me by my appearance, disability, but listened, was caring and gentle.

    If my carer hadn’t have recommended contacting them I would still be in an almost complete state of confusion about how I feel and now I not only have my GP on my side but a lovely lady who gave me time to talk and is going to support me through the next stages of my treatment to getting my #MentalHealth into a much better place at a pace that suits me and in a way that allows me to slowly lose the grip of this black cloud that has hung over me for so long.

    There is a long way to go and I really don’t expect it to be all sweetness and light but to know someone has my back and can help me find light in darkness, I may just start to find the lost me.

    Steps 2 Wellbeing

    #MENTALHEALTHHASAFACE

    I AM ONE OF THOSE FACES!!

  • Through Dark Clouds⛈ Comes Rain 🌧 and then Rainbows 🌈

    I’ve started writing this post so many times I’ve lost count. My mood has been so up and down this week that when I start writing nothing makes sense. To be honest the way I write is what I think so I shouldn’t be surprised that what I write at the moment is a complete mash.

    I feel awful sat here thinking how shit things are when all I hear right now is L laughing his head off at toy story and the birds singing in the garden.

    Who am I to feel so isolated and alone, when I have the most loving family and great friends. Why is it all I feel is an overwhelming sense of failure and burden when I see my children laughing and others around me so happy.

    This past week I’ve allowed the dark clouds to overwhelm me, sneakily I suppose and most definitely when I’ve least expected it.

    What right do I have to feel so useless and crap when I watch those around me holding things together when catastrophic events are happening in their lives?

    I’ve seen people battle through their working week when family members have been so very very sick. I’ve spent the week looking up to a person as they’ve held down their work, run their house, run backwards and forwards to the hospital, demand answers, deal with family yet they are still standing strong and keeping their head held very high where it should be as they’ve shown tremendous strength and courage.

    I’ve watched them over this time and been in awe of how they’ve kept going and it’s made me question why on earth I cant keep myself with my head above water.

    This week I’ve felt more and more like I am losing even more of a grip on my limited role as a parent, wife and myself. I’ve cried over the most stupid of things, not wanted to get out of bed, wanted to quite literally bury my head in the sand and wash away all this stuff that’s worming it’s way through my thoughts and making me want to turn back the clock and be a normal person again.

    I know I should be grateful for what I have, I know my husband loves me (I don’t understand why or how he can but apparently he does), I have 2 children who I love with every ounce of my being and that I would do anything in my power to give them the lives they deserve. I have family who love us and help us within their own capabilities.

    So with a life so rich in love, why oh why do I feel so alone/so useless.

    This week I proved to myself that not only am I failing as a parent but also to myself.

    I don’t know what possessed me to think I could self transfer from my wheelchair onto the stairlift but in my head I needed to get upstairs. I wasn’t really prepared for the fact my brain and legs aren’t connected or speaking to each other. My stupidity led to me falling from my wheelchair onto the floor, smacking my leg as I went down. Paul found me in a heap and had to drag me through the kitchen to L wet room and hoist me back into my chair. So now not only have I a huge bruise on my leg but i feel even more useless than before.

    I feel like im in a big black hole that is getting tighter and tighter and I’m finding it increasingly harder to keep a grip on the top to pull myself out.

    I hate the way I look, no matter how little or much I eat I cannot shift the weight and I find looking at myself horrendous as I look and feel so fat.

    How can anyone bear to be near me. I loathe myself so much.

    I know people will say ‘chin up” ‘keep smiling’ ‘you aren’t that bad’ ‘stop being so negative in your writing’ and much more but right now this is how I feel deep inside.

    The sunshine has helped lift my mood a little, especially when spent around friends and when my carers, 2 in particular, come in and have a chat with me and try to lift my spirits with a laugh and smile.

    It’s their upbeat, happy kindness that bring the rainbows into my dark days. They talk to the boys, make L laugh and poke his tongue out, make A squirm when they nag him jokingly about his homework (or lack of it!! He certainly doesn’t listen to me about anything I ask homework or home wise!!!)

    I’m finding I’m getting increas#iĺy anxious in the middle of the night, panicking about which carers are due in that day and whether I know them well or not. There have been a lot of changes lately and I’m finding it hard to process my anxieties over these changes. I know deep down I have nothing to worry about as they are all fantastic. Sounds so stupid when I’m writing it down. Pathetic really.

    My boys and hubby are my rainbows, always full of laughter and all Ls carers bring smiles and dippyness into the house making it a happy buzzing home.

    I know that some people reading this will tell me to stop moaning and look for the bright side but right now all that I see is a black cloud with flickers of a rainbow poking through.

    I’ll stop writing now as I think you’ve all had enough xxx

  • Finding friendship at just the right time

    You have probably heard me moan many a time now that since falling ill with this debilitating condition that I have seemed to have ‘lost’ friendships in a very short space of time and that no matter how many offers of tea or coffee I’ve made, no-one has taken me up on them.

    Through the years of hospital life with my son I have found that those who provide much needed support and advice are those in a similar position. I’ve been surrounded by these people for years now and some are my most dearest friends but outside of this network I lack friendship from ‘ordinary’ folk. It’s like people only see my life with L and forget that I am also mum to a brilliant,smart attentive 12yr old who is just as much a priority as L. I hate choosing between one or the other and the decisions are never taken lightly. I have a few friends in exactly the same situation.

    The same thing seems to have happened since my own health became an issue and despite a few very close friends who I met thanks to L the only others are those in a similar health saga.

    Since my admission to hospital I’ve become close to 3 very different people. Each one is as valuable as the other and have all helped me during this difficult time.

    1 is a patient with health needs similar to mine

    1 is the wife of a patient on the ward who I connect with not only through my experiences of being a carer it also as being a patient and seeing things from her husband’s point of view

    The 3rd is a relative of a patient I met on the respiratory ward and we clicked from day 1.

    These 3 people have, along with the other few friends, gotten me through some pretty tough times emotionally and their constant presence in my life lately has been very gratefully received.

    I’ve had such a laugh with each of them and I am truly thankful for their support, understanding and even the nagging when I’ve found it hard to take on huge challenges.

    Everyone of us have our own battles ahead yet we’ve been supporting each other through them so far and I fully intend to make sure that we continue to do so when in our individual settings

    I genuinely feel that despite the shit thats been thrown at me these past 4 months that I have gained some amazing life long friendships and will do all I can to reciprocate the friendship they have shown me.

    Now to wait for everyone to settle back into their new normal and bring on the monthly coffee and cake!!!

  • Seeing through the Dis to Ability

    I’m the first to put my hands up and admit I struggle with my disability. Being in hospital and losing the small amount of independance I had really knocked my emotions and confidence for six.

    I feel a burden on those around me who care for me yet deep down I know that they do what they do for me out of love.

    I’ve found that by talking to those who care, those who truly listen really helps me overcome my sense of loss and burden.

    My family have gone above and beyond to provide me with everything I could possibly need to live as normal a life as possible yet I still tend to only see the DIS and not the ability when I look at myself from the outside.

    Too many people in life today, a life where places are much more accessible and set up for the less able, see life as a permanent uphill battle just to be treated as an equal.

    We will never be accepted as equals when we aremt given the tools and respect to live side by side with our able bodied friends and family.

    I guess our family is so much more different than the average family seeing as we have not just one person with a permanent disability but 2. L’s we have adapted to over the past 9yrs and boy has it changed over time. We try and include him in everything that we have to offer him. Yes we have to adapt things to enable him to participate in activities but we’ll always go and give our all to try and enrich his life as much as possible.

    The local Cub Scout group used to try and include L when they were having group activities. One of the most memorable moments was when the cub group went to have an archery session at their local activity centre. The leader of the centre went out of his way to find a piece of equipment that would safely allow L to participate alongside his peers. A some tennis ball, bow and a gate latch enabled L to fire an arrow at just a touch of the tennis ball. He not only got the target but scored points as well. Tbh I think hubby and I were far more excited, astounded and overjoyed at seeing him take part in such an able bodied task. They truly saw past the DIS and saw the ability in him. Everyone he fired the arrow all the cubs cheered him on, just like all their other peers.

    Now take me. I’ve only been in my wheelchair 2 years and I still struggle to see past the disability I had been dealt with.

    I won’t lie and say life is a bunch of roses but everyone around me tries to help me see past my limitations and find new ways of doing things and even encourage me to try new craft projects and everyday tasks but with a twist to make it easier. One of the biggest changes I had to make was to get rid of the kettle and by a hot water dispensing machine as I was finding it increasingly difficult to lift the kettle and use it safely. I found it hard to let go of such a basic simple skill yet the solution enabled me to make hot drinks in a safe and controlled manner without putting myself or others at risk.

    Simple things like putting food items on the lower shelves meant I could attempt to cook meals although having to bed and plead with others, who were already busy, to help me.

    My biggest hang up has to be the way I now have to parent my children. I am no longer able to carry out care tasks for L as just not safe for either of us and trying to parent a , now very tall and hormonal, 12yr old isn’t without its ups and downs. I not only have my emotional well being to worry about but also that of a growing young man who doesn’t understand fully his own feelings let alone mine as I try to be a mum again, and 50% of the time Im unsuccessful. I don’t know how to be a mum right now and that scares me. I doubt my own ability to take back control and I’m terrified that things are going to go so wrong and we’ll lose the closeness that we had before.

    I know deep down that I have the ability to be a damn good mum but at the moment the DIS is taking over and I’ve no idea am now to stop it.

    I’ve kind of wandered off of what I was trying to say about helping others see beyond the disability and focus on the ability and the things we can do to change people’s perceptions about what we can and can’t do. I guess we all have to play a part in making things as accessible and easy for those with additional needs, I guess it’s just a case of working out who is responsible for making life that little bit easier for anyone and everyone irrespective of whether you are able bodied or not.

  • Just Because My legs Don’t Work……

    I’ve been spending a lot of time talking to wheelchair users of all ages and illnesses and one thing keeps being mentioned,so i thought that maybe now is the time to address a rather important subject for those of us confined to our chairs and dependant on others for helping us get about in day to day life.

    This issue affects all ages and after bringing up and caring for a severely disabled child for 9 years, Now I am dependant on others to help me and I am utterly fed up of this issue and the feelings it brings to light.

    I’ve lost count of the number of times that my son, myself and various friends, also wheelchair dependant, are blatantly ignored and only the person pushing or accompanying gets addressed when we bump into people. The number of times L or myself have been looked over and totally ignored as if we are inferior to them and we dont deserve to be greeted, acknowledged and spoken to as an equal. I know L cannot verbalise like you or I (yes I can talk if you hadn’t all ready gathered!) doesn’t mean he should be treated any less respectfully than your average able bodied person.

    I’ve had people address my hubby and ask questions about how I am and how things are without even a look in my direction. I DO have a voice and I know how to use it! Don’t ask my husband how I’m feeling as he won’t know unless he asks me!

    Lewis will smile at you and laugh with you if you just took the time to engage with him. He loves to touch faces, play with hair and loves seeing smiles beaming back at him. His smiles speak a thousand words if you’d juat take the time to talk to him.

    I also hate when people lean down into my face and start talking to me in a pitying manner and then talk to me like I am a toddler. I’m 39 yrs young and I know how to hold a conversation. Don’t ask my husband questions about how I am doing, what I’m up to etc. He has enough on his plate without having to talk about me unnecessarily when I have my own voice and opinions.

    I get upset being treated as if I don’t exist, is my life really valued any less just because I’m in a wheelchair? Is my son’s life worthless because he is in a wheelchair and doesn’t talk to you in the way you would want.

    Just because we have wheels doesn’t mean we have no capacity to engage in normal life.

    It really frustrates me that our basic human rights to speak are snatched away because you THINK you know best.

    All I ask is that next time you meet a disabĺed person in a wheelchair, please don’t talk over their head and ignore them. Get to know them by talking to them, don’t pass judgement unless you’ve experienced it yourself and don’t assume that we can’t talk

    #everyoneisentitledtoavoice #moreawarenesslessassumptions #evenasmilespeaksathousandwords #eyecontactmeanssomuchmore

  • Wobbling…..

    Not just emotionally (a whole other post to follow I’m sure) but physically. Oh My days how much weight can one person put on when trying to lose It??? It appears in my case to be a lot and boy is it getting to me!!

    2 yrs ago just prior to falling ill I weighed a healthy 80+kg. I had a nice figure, was proud of how far I had come post kids (took 7 yrs to get there but I did!) and all was good.

    2yrs on, wheel chair bound and weighing in at 108kg, I am mortified by how I look and feel!! I have 3 chins, massive thighs, a huge backside and an ever increasing waist line. None of them will budge and it seems like they all rather like being a part of me despite me trying desperately hard to lose them.

    I’ve cut my calorie count by 400, I have gone from 2 teaspoons of sugar in my tea to 1/4 (or none depending on the member of staff). I eat pineapple and blueberries daily and have reduced my dairy intake (mainly cheese) by 2/3. I cant cut dairy completely due to having an area of osteopenia in my bones and I can’t take to high a dose of calcium supplements in case I get bladder stones and block my catheter.

    I don’t eat chocolate,I drink sugar free flavoured water and have only 1 or 2 low calorie snacks a week.

    So why after all of these changes have I put on another 1.2kg this week.

    I’m losing my mind over this. Even the dietician can’t explain it.

    What the hell is my body playing at?

    I know my reduced mobility, more so now that I cannot walk the few metres with a frame like before, will automatically affect my weight buy seriously this much?

    I’m at the stage that I am scared to eat and I know that’s a dangerous place to have my head at but I have no idea what I can do.

    I wobble as I roll along, my Suprapubic catheter is stuck right in my belly crease and I swear it gets squashed!

    It’s keeping me awake at night (as you can tell by the time of this post.

    I need the help of all of you in Blogland. How can I lose this weight?

    I’m already suffering with shortitis and I really do resemble a weeble!!

    I know there are a few of you who will tell me it’s ok and natural in my current physical and mental state but I’m tired of trying and it failing.

    I think I’m destined for a diet of fresh air alone.

    Oh well time for bed said Zeberdee

    I hear my bed calling……….