I just don’t know what to do with myself

So, for the last few weeks I have been feeling worse than ever. I realise it seems like I have been sick for ages, and I have, but after a few months of tests it was decided I had Sarcoidosis and after four months off work I started relevant meds and went back to work. The first couple of weeks were fine, I felt energised after making sure I has enough rest, good food, supplements, meditation and lots of water. Then, it all started to go down hill, I was really worried that the sarcoid was starting to get worse again so off to the doctor I went, she arranged an emergency appointment with my Rheumatologist, a few tests later and she talked through my symptoms, chronic pain, extreme fatigue, swollen joints, weight gain and she told me I had Fibromyalgia. I had already started crying at this point, I rarely cry, but the despair was starting to engulf me, I was sick and tired of feeling sick and tired and here was another bloody illness to manage. The list so far in order of diagnosis starting from when I was 20;

Osteporosis

Coeliacs Disease

Bursitits

Autoimmune Hepatitis

Hypothyroidism

Sjogrens Syndrome

Sarcoidosis

Fibromyalgia

The last four have arrived over the last five months. I am usually so in control of my illnesses, a responsible patient, participatory in my treatment, a really honest and open dialogue with my doctors, I know my illnesses inside and out and they don’t frighten me. I listen to my body and take all in my stride, I’ve never been the type for hysteria.

The Sarcoidosis diagnosis was a relief as we had been considering cancer, Sjogrens is liveable with, dry eyes,mouth etc, the Hypothyroidism is a little more complicated but I am monitored and all is in is order but the Fibromyalgia – I’m not so keen.

The majority of my illnesses are chronic, and those ones are in remission, apart from the Fibromyalgia and from what I can lean it is a difficult one to manage. There are no medications or cures, I have been referred to the Pain Clinic to discuss subtitle medication to enable me to function, but as is always the case nothing is that straightforward. I am allergic to some of the main types of pain meds, the one that don’t really interfere with everyday life, so they are off the menu. Now I shall have to wait and see what they can suggest. I have been signed off work for two more weeks as some of my meds have been adjusted to compensate for the Fibromyalgia and the pain and exhaustion is overwhelming.

I cannot imagine living like this for the rest of my life and I am panicking like mad, I’m not used to feeling so out of control, usually I just knuckle down, learn all I can about my illness, my body lets me know what I need to and I get on with it. This time its not that simple, nothing I do makes me feel better or more able to cope, I can’t sleep as my mind is swirling, being inside doesn’t help, being outside doesn’t help, reading about it doesn’t help, being with people doesn’t help, being alone doest help, reading, radio, tv doesn’t help,the meds don’t help, and I am worried about the future. What if I become too sick to work, I am a single parent, how can I pay the mortgage? I’m meant to start my Phd in September having deferred it from the beginning of the year due to the Sarcoidosis, what If I’m too sick to start it? My daughter is five, I don’t want her to think of me as ‘sick’ or having the mummy that always needs a ‘rest’. My mum was a single parent and she was sick a lot when I was little and I remember how frightening that was for me. I am becoming depressed, I know that, I can feel it, but I cant seem how to crawl out of the deep well I am falling down, time is running out, I can’t afford to spend what little energy I have trying.

Is this it? The pain may be manageable but the exhaustion? It is crippling and completely uncontrollble. On social media those suffering with chronic illness use #spoonie to identify relevant tweets, this is based onthis article written by Christine Miserandino,  I highly recommend you read it, it is the best explanation I have ever come across (and it uses spoons to explain everything – brilliant).

 

 

 

My week in pictures

Monday

I blogged about my crappy father

Tuesday

I ate all of Lulu’s mini boxes of cereal for dinner while she was at her dad’s (gluten free of course)

Wednesday

Lucia and the puppy slept with me

Thursday

Back at the hospital for more tests 

Friday

Celebrating the boss’s 60th

Saturday

Off for a swim in the Lido in the rain – I promised her!

Sunday

Woke up to this glorious weather to took the puppy to the park

 

The sun ain’t gonna shine anymore

#whatpeopledontsee is the brilliant hashtag being used by Blurt (Increasing awareness and understanding of depression) on social media that allows people to share their experiences of depression during Depression Awareness Week. If you want a glimpse at how strong and resilient as as well as heartbreaking and soul destroying life can be please pop over to twitter and have as scroll though, I have participated also.

I have written about my own experience with depression before, it isn’t very glamorous or ‘aspirational’ but I wanted my blog to be a place of honesty and my mental health is part of me – or should I say my mental un-health – as we all have mental health, as we do physical health.

I believe passionately that we should provide education in schools about good mental health and what happens when people experience difficulties, in exactly the same way that we are taught about healthy eating and physical health. Otherwise how the hell is anyone meant to know what’s happening to them when their mental health starts to suffer? and of course the stigma remains as people are frightened to even say the words ‘depression’, ‘anxiety’ or ‘mental health’.

Talking therapies, mindfulness, CBT and meds are all valid ways of addressing the issues that we might experience but no one wants feel like the ‘one who can’t cope’, which makes it even more difficult to ask for help.

Our lives will always contain an element of stress, its part of the human condition, but we need to have the tools to deal with it. Please note I am well much aware of the difference between suffering from stress and suffering from depression but if we can show people and get them to think about the fact that they experience stress, which is a universal mental health condition then its not too big a leap to get them to consider how feasible and okay it is to suffer from other mental health issues such as depression.

It is very hard for those who love someone who suffers from depression, particularly as the reflex reaction is to try and ‘fix it’ but of course it can’t just ‘be fixed’, the most helpful thing is to acknowledge the illness and be supportive, and seek support for yourself as well if you need it.

Having depression doesn’t mean that you are mad, bad or sad. It means you are unwell and like any illness that manifests itself mentally or physically the most important thing is recovery, no matter how long  a road it seems.

 

 

My week in pictures

Monday

Lucia’s daddy bought her a new bike in ‘Tiffany Blue” & she grew up over night!

Tuesday

Had to get my hideous scarred legs out as I was SO hot.

Wednesday

Did a spot of birthday shopping for M.

Thursday

Off to another hospital, not for me for a change.

Friday

Hospital appointment for me.

Saturday

Took my leopard print shoes out for dinner, they never get to go out!!

Sunday

Sun was shining so took pup pup for walk/run.

I’m starting with the man in the mirror

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!

 

 

 

My week in pictures

Monday

Picked up more drugs from the Doctor.

Tuesday

Sent this to ex husband to remind him of ALL the champagne & Eggs Benedict we ate at this place in the wee small hours of the morning.

Wednesday

Horrid grey comment to work

Thursday

Had my eyebrows threaded. Oh, the pain. But so worth it.

Friday

Good Friday iPad film watching with baby Lulu

Saturday

Easter nails

Sunday

Lulu teaching the puppy how to iron, she must get it from her dad as she has never seen me iron a thing!