The true cost of chronic invisible illness. And I’m not talking about the strain on the NHS or the economy due to lost days at work.
I’m talking about the personal cost. I read a piece recently about a woman who had had her Disability Claim denied because her assessing Dr decided that, after viewing her pictures on social media “the person depicted in most of these posts appears to be a young woman who is engaged in life activities, awake, smiling and alert. They do not appear to depict an individual who looks chronically ill”. He saw literally a snapshot of her life, he didn’t see the other 23 hrs and 55 mins of her day, the effort required to look happy, force yourself out of the house, to endure the ever constant pain and exhaustion is impossible to impart. Every day is a struggle, every single day.
My relationships have suffered, with my friends as, after a day at work, all I am capable of doing is getting myself home, getting my child to bed before I am literally on the floor with pain and exhaustion. So no more socialising for me unless it is in very short time frames, I have had to cancel plans so often that I just don’t make them any more. With my partner, a lot of the time, merely having my hand held hurts, I think you can see where I am going with this. He is a loving and patient man but why should he sacrifice his needs because I am ill?.
I was off work sick for a substantial amount of time and while my employer was very understanding I do realise that being a team member down impacts on the business and my colleagues, the anxiety of staying at home is real, it isn’t an opportunity to put your feet up and relax. I was due to start my Phd in January of 2016 but had to defer due to my newly diagnosed illness and I commenced in September instead. Today I saw my Supervisor and after discussions had to acknowledge that I am going to have defer this semester too and start again in the September of this year as I cannot keep up with the work required. I cried about this and I am not really a crier.
I am not the mother I was or want to be. It was Lulu’s birthday last Friday and I promised her a trip to McDonalds after I got home from work and hospital (I’m in the middle of a 8 week treatment course). By the time I got home I was so exhausted and in so much pain that I was shaking and couldn’t think straight so I lied to her and told her that McDonalds had flooded – this has actually happened before when it rains- and that we would go the next day but Saturday came and I couldn’t use the last of my energy driving there as we had to drive to a friend’s house for Lulu’s dinner, I am constantly having to make choices based on my energy and pain levels which is acceptable but of course as a parent, and friend and partner, these choices impact on others.
I had a brain procedure sone on New Years Bank holiday Monday but my veins are so bad they couldn’t get the cannula in, after a number of goes they managed it but by the afternoon the bruise was enormous and black, I couldn’t keep it disgusted so Lu saw it and was clearly concerned, it looked awful. Why should my child have to see these things? She is 6 years of age, she shouldn’t think her mum is sick. Last ear I had Erythema Nodosum all over my arms and legs, big painful red swellings, I couldn’t have Lu on my lap or hold onto my arm because it hurt so much. How frightening for her that must have been? Not being able to cuddle mummy when ever you want because you will hurt her?
As a side issue my vanity has suffered greatly. Months of being bed ridden and increasing doses of steroids have left me overweight, bloated – hello moon face !- and spotty, thanks for the steroid endured adult acne. Lulu announced the other day that my tummy was so big it looked like I had a baby in it but that she knew I didn’t and that I was just very big – I’ve had to coach her endlessly on not using the word ‘fat’ as it is hurtful to people. She also added that her dad’s girlfriend had a very small tummy because she wasn’t big – thanks Lu, I just has t0 smile through gritted teeth and agree.
I can no longer walk very far, before slowing to a snails pace as it is very painful but I walk as much as I can, you know cause its healthy and all that. I spoke with my GP about applying for a disabled badge for parking so I could park closer to the station so the walk would be sorter and the amount of pain I would have to endure would be lessened but apparently I don’t fall within the criteria, the ability to walk more than 50 metres means no badge. I can walk more than 50 meters, in agony, and pain that is so exacerbated that it remains with me most of the day. I am one of those people that fall into a grey area. The fact that I go to wok every day appears to mean that there is nothing wrong with me, that I need no other support or assistance. I go to work, because I have to, not because I necesarily feel well enough to do so, I have responsibilities, a child, a mortgage and it’s just me and my daughter. So essentially unless I am entirely bed ridden I am not eligible for any assistance. The fact that a day at work (see feature photo of me on train home) means that the other 12 hours of the day are written off is irrelevant. Cleaning my house is a painful exhausting and very time consuming event, so I am caught in a Catch 22. At the moment I feel like I am merely existing, functioning, getting though one minute, one hour, one day at a time. Doing the practical and necessary things as far as I can and then there is nothing left for ‘me’. My Phd was for me and now that has had to be shelved.
This post isn’t about self pity, I don’t feel sorry for myself, I feel upset and frustrated and tired and old and frightened. I never thought that at 42 I would feel this way. Never.
So the long and the short of it is just because I look ok, just because I go to work everyday, just because I smile does not mean in any way that I am actually ok. Invisible illness is real, it affects 1000s of people, trust me when I say that I do not feel good. I am trying my best, my absolute best, I cannot explain how hard I am trying.
I was brought up by my mum and my grandma, they were strong, loving, affectionate women, very different to each other but I always felt safe, secure and wanted.
My parents separated when I was 18 months old, and I have no re collection of having lived with my father at all, my mum and I loved back to the UK and he remained in the Middle East. I saw him very infrequently during my childhood, maybe once every few years, a phone call every other year and absolutely no financial contribution to my up bringing at all. We lived in a bed sit when I was very young and eventually got a flat with social housing, but the lifts always broken and carrying a three year old up 24 flights of stairs, occasionally in the dark, can put a strain on you! My poor mum.
The lack of financial contribution may not seem unusual but he is an extremely wealthy man and it seemed rather cruel of him. My mum worked as a cleaner to support us, food was scarce on occasion, but my mum was the one that went without, never me. The only furniture we had in our first flat was a chair and a mattress, in our second we had no cooker so used a primus camping stove ring, all very exciting for a city dwelling child – felt like ‘camping’ indoors. We had the gas and electric cut off a few times, so out came the candles and battery powered radio, rather romantic! I remember the day the men came to take our sofa and armchair away as we couldn’t afford to pay the monthly amount, that was the first and last time my mum ever got any thing on credit, she still doesn’t have a credit card. ‘If you don’t have the cash then don’t buy it’, she hated owing ‘the man’. And yet my father still refused to contribute, he would turn up on occasion to our flat, stand around in his expensive suits and remark how disgusting it was, how disgusting london was and that I (me) could have a lovely life if my mum just sent me back with him to live but she always said ‘ no’, thankfully. Essentially my father is not a nice man, as I hit my teens when ever he would show up he would call me a slag or a slut for wearing a summer dress above my knee, he would say London had made me dirty. See, what a charmer! Incidentally, I hadn’t seen or heard from my father in many months when I had gone to the local Sainsburys in Hammersmith during my lunch hour in Sixth Form, and there on the magazine shelf was was dad – on the front cover of Hello or OK magazine at the races with Princess Anne, at least I knew he wasn’t dead. He, of course, couldn’t say the same of me.
Now, where was my mum in all this glorious father/ daughter bonding I hear you ask? Well, my mum had her own issues to deal with and so, for her own reasons, she never stood up for me. When he would telephone when I was little and I would cry and ask why he never remembered my birthday or bothered at all with me, he would start shouting and call me disrespectful, my mother would then shout at me telling me it was my fault that my father was shouting because I had upset him, thats hard for an eight year old to hear. I shall now divulge two rather sad things that could only come from the mind of a child; firstly, I thought that my flat must have TV cameras in so that my dad could see me because surely he couldn’t go for so long without seeing or contacting his child? I imagined him watching over me during his busy life. When I figured that wasn’t true I thought that I must be adopted, why else would he treat me so differently to his other children? Because they come from a different mother I hear you cry? well, no, I have an older brother and sister that stayed with my dad and that my mum didn’t see for sixteen years despite all her efforts, see? a cruel cruel man.
Between the ages of eight and eighteen my mother forced me to spend at least a week a year with him and his family, at last count he had seven children, all living with him, or now I suppose, holidaying in one of his properties in Switzerland, or Vienna or Morocco or Dubai or London. I’m not sure any more as the last time I had any contact with my father was more than ten years ago. I telephoned him, one day, thought I’d give it another go, he answered and asked who was calling, I said to him ‘Miriam, your daughter’ and he hung up immediately, never to be seen or spoken to since. How to win friends and influence people!
Those weeks I spent with my father in my childhood were awful, mostly spent living in a bedroom, I couldn’t understand what people were saying and I was homesick, no one ever actually spoke to me, it was as if I didn’t exist. Those experiences took a big toll on the relationship I had with my mum which has never really recovered, and yet she kept sending. In her her mind if something happened to her I would have to go and live with my dad and she wanted me to know him. When I went to stay with him in the holidays I saw him for maybe five minutes in total as he was often away working or simply had no interest in seeing me, neither did anyone else for that matter! I would have preferred to take my chances with my mum’s family had something happened to her. Well, the irony is that out of all my fathers children I am the only one who looks like him all, my siblings look like their mum, and I don’t look like my mum at all, my older brother and sister look quite like my mum. So, everyday I look in the mirror and I see the features of a man I really dislike, a man who has treated me appallingly, left me emotionally bereft and feeling worthless, big stuff for a child to try and dissect and deal with. I used to worry about how unpleasant a man he was as I had half his DNA in me, that somehow I would turn out like him, I’m hoping I haven’t -selfish, spiteful, cruel and mean – but that up to other people confirm!
I didn’t want to do a ‘review’ of 2015 as, whilst looking back is interesting in some respects, for me over analysis is not always helpful. I am always mindful that ‘the past is a nice place to visit, but certainly not a good place to stay.’ So, I have chosen 12 photos that illustrate my 2015, there isn’t one from each month but one from each of the significant significant events that happened.
12 photos, 12 months
1.We got a Puppy
2.Lulu started school
3.I was off work and in ALL the hospitals
4.I fractured my wrist
5.I went to New York for the first time
6.I went to Suffolk (twice)
7.My Decree Nisi was granted
9.I saw my mum, alot
10.I planted and harvested from my allotment
11.I got offered a place for my Phd at Oxford Brookes
12. I turned 41
When I was little we didn’t actually go on holiday in the modern sense. In the summer we went up to Scotland to stay with my Aunt and my cousins for a couple of weeks and twice we went to Brighton to stay with my Uncle. The other school holidays were spent at home, going to the park or playing out with my friends from the same building as me. Yes, believe it or not small children played hopscotch unsupervised on the streets of Ladbroke Grove! We used to play with the children in the next street too and came home when we could hear our mums shouting our names out the windows. My mum was a cleaner and worked odd hours so then my grandma would look after me. In those days the holiday abroad was rare among the people I knew, we didn’t have much money and a holiday was seen as luxury not a necessity. I still have that mentality today, I love going on holiday but I don’t expect it, if I can save enough then great, if not then the park and swimming it is. My mum took me abroad once when I was seven, to Malaga, it was amazing! the sea, the beach, the food, it felt incredibly exotic.
From the age of eight my mum used to make me go and stay with my father abroad, where he lived, for two weeks in the summer and it was absolutely awful. I didn’t know my father or his family, we didn’t speak the same language – literally – and I hated every minute, they were mean to me, they made fun of me and they ignored me. I missed my mum so much that it hurt and yet every year, for my years, as the summer holidays approached I knew what was going to happen and that sense of foreboding and misery really tainted a lot of my child hood holiday time, I dreaded being sent away.
Apart from Spain the only other ‘proper’ holiday I had was when my mum and my aunt took me and my two cousins to a house that they had rented in Walberswick,Suffolk, from the friend of the woman my mum cleaned for.
It was the best holiday ever! The house was on the green which had swings, you could walk to the beach and there is a bridge where you go crabbing, having picked up the lines and bait of bacon scraps at the local Spar. There was very little traffic and you could rent bikes from the garage to go whizzing around the country lanes. There was even a chap with a rowing boat who would row you across the estuary to Southward for 10p each, bikes extra. It was like the Famous Five made flesh. Picnic lunches of white bread cheese sandwiches on the beach, making sand castles with one of my cousins who was a year older than me while the other, who was 14, would wander up and down the beach looking wistfully out to sea in the first bloom of teen angst. Her brother and I laughed at her a lot, after all what more do you need to make you happy than an ice cream and a set of swings right in front of your house?
I have lots of not so good memories from my child hood but that holiday and that place stir memories in me of pure happiness. We never went back after that trip but then I had Lulu and wanted her to experience the same sort of fun as me so I started taking her to Suffolk too. When she was about six months old my ex and I rented a gorgeous house in the midst of the forest in Orford and took our mums with us, a good friend also came to stay for a few days. Then a short time later we rented a cottage in the middle of an apple orchard near Saxmundham with our god child and her parents. A few months later it was a cottage in Orford and some of Lulu’s godparents came to stay. Then last summer I took Lulu on our first single parent holiday to a cottage in Walberswick, my mum came too and the three of us had a whale of a time.You could see the sea from my bedroom and it was perfect.
In April this year I rented larger house in Walberswck and M came along with his two children, as did my mum. We have rented the same house for two weeks at the end of August for us and the children again, and of course my mum! It is magical amazing place, we all go crabbing on the bridge of my childhood memory, we cycle to the Co Op (the Spar is long gone) for papers and milk, we get in the little row boat across to Southwold, we play on the beach, get sand everywhere and then go to the Anchor for dinner and Adnams ale. It is exactly a I remember it as a child and I adore going there. I hope that when Lulu grows up that she has as many fond members of Suffolk as I do and if i’m really lucky I may be able to take my grandchildren there too.
Having a baby was a long old slog for me and my soon to be ex husband, the getting pregnant bit was easy, it was keeping the babies alive that was hard. Anyway, that’s for another time. So now here I am, the mother of a sprightly four year old little girl. I named her Lucia and I call her Lulu but now she keeps telling me her name is Lucia, nice huh?
I went back to work when she was ten months old and she went off to full time nursery, I didn’t feel guilty (but I did feel guilty about not feeling guilty). She loved it, in fact she cried every time I picked her up. Then she went through a phase of crying when I dropped her off, that was in the months after my husband left, I really hated him, not for hurting me but for hurting her. For the first time ever I sat in my car in the nursery car park and sobbed. She was insecure and clinging for a long time, she hadn’t really been a very cuddly child until then, but I enjoyed the cuddles, so silver linings and all. Thank fully she is now back to her old self and runs through the nursery doors without even a goodbye kiss
In a few months she will be off to ‘big school’, OMG. What if they ruin her? what if she hates it? Will I be held to ransom by the evil holiday companies charging the earth for breaks during school holidays?
I’m a little sad that I will no longer be able to take a day off work and keep her home with me just so we can have fun on a week day, ‘the man’ will make her go to school all week and our fun will be reserved for the weekends. I also feel a bit sad that I wont be dropping her off or collecting her, commuting to London, full time job etc. I always loved seeing my mum waiting at the school gates at the end of the day and walking to school with her is a good memory for me. I try and hold onto those memories on the days my mum is driving me mental with all her unwanted parenting ‘advice’. Its hard.
But the first hurdle is getting Lulu into the local primary school. My mouth dropped open when I viewed the school in our catchment and was told that the intake for Lulu’s year was eight places. Eight places? what? So fingers crossed she gets in and then I can concentrate on worrying about all the above. I want her to be independent and confident and happy but it feels a little bit like she is slipping a little bit further away from me, like the first time she crawled, when she literally was slipping out of my arms and across the living room floor. I know its the next stage in her growing up and I really want that to happen but since I won’t be having anymore children it feels very final.
Ps I found out on Thursday that she got into the local primary school. Hooray.
Lulus father left just after her second birthday, I had never factored in being a single parent. I won’t lie, the last two years as a single parent have been challenging, ok being entirely honest, they have been damn hard. Suddenly I found myself responsible for everything, getting Lu to nursery and home when I work full time in London, Lu wasn’t sleeping through the night ( she rarely does now), she was still in nappies, still teething, the only family I have is my mum who lives in Greenwich, south London which is as far away from me on the tube map as you can get. And I was sad. The man that I loved had left me for no apparent reason, well nothing he was prepared to verbalise to me. Not only had he gone, but he had moved far away.
My mum was a single parent, my grandmother was a single parent to seven children to all intents and purposes (my grandad was alcoholic) and I really really tried my best in all my decisions to ensure that my baby would have two parents who stayed together. My dad abandoned me entirely when I was 18 months and the irony that my husband left when Lu was two was not lost on me.
I was brought up by my mum and my grandmother, both of whom were strong, tenacious and brave, though they had entirley different personalities. My mum is quiet while my grandma was loud, verging on bolshy. I’m more like my grandma than I am my mum. And while my grandma has pass on her influence on me is ingrained.
So when I became a single parent I never worried about my ability to bring up a well rounded happy child, I worried about how I could fit in all the practicalities that had previously been shared between two. My mum stepped in (though she drives me insane, ‘why don’t you..’ ‘if I were you…’ arrrggghhh) to help with nursery pick ups, she did the laundry, she read lulu bedtime stories, she cuddled me when I cried and it all felt too much. But the thing that helped the most was that she had complete and utter faith in me, every time that I had a wobble she would say to me over and over again ‘You are enough’ ‘You are enough’ ‘You are enough’ and now I know that I am, indeed, enough, that I can cope well with the grown up stuff, getting a mortgage, arranging my own divorce, and that I am a good mum to Lulu.
So to my mum and grandma (wherever they sent you!), though Mothers Day has been and gone, and I think that you mither too much mum, I wanted to say thank you, for making me me and I wanted to tell you that I am not frightened anymore. I know that Lulu and I will be okay.
So to anyone having a hard time let me tell you this, You are enough, You are enough, You are enough, You really are enough…..xxxxxxx