Don’t Make Me Hate How My Body LOOKS As Well…

IMG_2813.PNGIt’s that time of year again, the time that I, & many other women dread, the time where we’ll receive judgemental looks & hear snidey whispers: summer time.

The easiest way to keep cool in the summer is to wear as little as is comfortable. It’s the time for bikinis & belly tops, for short shorts & flippy skirts. The time where we dress to feel cool over looking cool. It’s also prime fatshaming time.

Slogans screaming ‘Are you beach body ready?’, the super cute belly tops that aren’t made over a size 14 as designers don’t want an actual belly ruining their vision & swimwear telling us to love our curves whilst ‘controlling’ the more offensive ones.

IMG_2814.JPGNow I don’t have the greatest relationship with my body at the moment but it’s not because my wayward curves are giving me grief. I have beef with my body over the way it works.

I have numerous diagnoses that can cause me to curse my body. The hypermobility disorder that has left me with weird shaped knees and a constantly puffy ankle. The same disorder that causes crippling pain and weird skin tags that seem to appear from nowhere. I have fibromyalgia that makes my body feel heavier than even my inflated BMI could suggest. I’m so unable to regulate my temperature that the same body that shiverered under many layers in winter is now saturated with sweat for much of the time. My heavily follicular ovaries mean that my face nowadays is covered in peach fuzz that stops my contour being on fleek. My pain and fatigue make regular grooming ridiculously hard work so I’m prone to skin irritations, ingrowing toenails & other unpleasant stuff. The asthma I’ve had since childhood can make breathing on a summer day feel like a record breaking attempt as the warm air, pollution and pollen combine to irritate my lungs. My pale skin burns easily or turns into blotchy freckles so I need an annual mortgage extension to buy sun cream. My weakened ankles mean I can’t wear pretty heels whereas my weak arches grumble at flimsy sandals. I have a LOT of reasons to fall out with my body.

Oh, and I’m overweight. I’m about a size 18 or 20, I weigh as much as a rugby right back & my boobs are a cumbersome 36GG. I’m not always bothered by that though, in fact when I’m in the privacy of my own room, looking in the mirror I think I look quite nice & my husband seems to have no complaints; yet when it gets hotter & ‘body beautiful’ is plastered everywhere & I hear the whispers on the school run or the cruel jeer of a stranger it hurts me. The clothing designed to ‘control’ my body from somehow shaming me, hurts me. Then I wonder if it’s size is yet another thing to add to the list of ‘why I hate my body’?

FUNdraising? Try HELLraising…

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That tear stained afternoon brought my reality into sharp focus. My mobility had rapidly deteriorated and there was no acute event that had prompted this. I had theories as to what was wrong with me but then even my mum’s second cousin twice removed seemed to have theories; but a theory didn’t help me do the school run.

Luckily it was the Easter holidays and I therefore had a bit of breathing room. I couldn’t see myself walking the 6 miles a day anymore and my husband’s (still felt weird saying husband as we should have been honeymooning) work meant that he could only help occasionally. I had some help from the other mums but again was sporadic and it wasn’t fair to anyone to see that as a solution. The only answer was wheels.

I can’t drive, I never have driven as I’m a fast walker and was used to covering large distances everyday; my own school had been the other side of town, it never phased me. Up until my son was born, when I was 28, not driving had been a choice, however having detached a retina in childbirth, and losing much of my visual field, that choice was taken away from me.

The options I was facing were regular taxis, a self propelling wheelchair or a mobility scooter. Taxis I ruled out quickly; they were still me relying on other people which I was reluctant to do, besides cost wise it would be at least £50 per week & I didn’t really have that in my budget. A self propelling chair wasn’t really a choice either as my arms are almost as bad as my legs and certainly not up to the distance. That left a scooter. We went to the mobility centre in our town & asked about hiring one, my rheumatology appointment was about 6 weeks away and we thought if I was diagnosed with something simple to treat that after a month or two I might be able to walk more; the trouble with that idea was that it cost £150 per month & realistically the least time we would need it for would be 3 months. Even the woman in the shop told us it was a false economy and that we should look into buying one. That was when things got really tricky.

Buying a scooter was clearly the most sensible thing to do but it still wasn’t a straightforward decision. I live in a small cottage down a ramshackle footpath and have very little storage space. On top of this we don’t have a car and need to travel to the Midlands regularly so that I can spend some time with my stepchildren. I needed a scooter that could not only go on trains easily but that could be got through stations that don’t have step free access; this meant that a foldable scooter was the only thing that would do which unfortunately also placed me in the £1000+ price bracket.

I don’t have savings, I was on statutory sick pay in a low-paid job anyway and I didn’t have the means to buy a scooter, yet needed it urgently. After long discussions with my friends and family I decided to start a fundraising page. It was horribly horribly stressful.

I try to live by the saying that pride is the appendix of emotions but my pride is more than grumbling. My ego had already taken a knock with my mobility failing, having to go cap in hand to people was almost an instant knockout. Straightaway I was faced with having to justify my choice of such an expensive scooter over and over again. I felt like I was being spoilt, as if I was asking for too much. Maybe I was, but people didn’t have to help me. I got myself into a situation where I had to reveal how much I weighed, as someone pointed out a cheaper model that might be suitable, but not for someone of my size, that was excruciating. I went on to a local mother’s support forum asking for advice on fundraising. I mentioned that I was fundraising for a scooter, but not once did I ask for donations, I didn’t even post the link. As my bruised ego was worrying about looking like an old lady riding a scooter, I was trying to think of ways that I could lessen that effect.  I pondered the idea of getting one spray-painted and so asked for advice on spray-painters, I even pointed out that it was nearly my birthday and then maybe I’d get someone to get it for me as a gift as obviously I didn’t want to increase the amount that I was fundraising for. I noticed that my posts were being deleted and I asked why. I wish I hadn’t.

The reply was that I was asking for money, that I was being unsubtle and trying to get money out of people and that people in the group felt uncomfortable; that they had messaged the admins behind my back and that the admins were trying to ‘protect’ me from the nasty things people were saying about me.  I was told that everyone had problems that everyone like would like to have things given to them,  that everyone would like a free spray paint for their birthday. Something I hadn’t even asked for. I cried a lot. I wanted to give back the money that I had raised so far (none from this group I’d like to add). I turned down the offer from the local paper to run a story on my plight. I felt like a beggar, I felt humiliated. I wondered if perhaps I had said it wrong, I was in a lot of pain, I was on a lot of drugs, perhaps it had come across wrong.

That was my low point.  Begging for something that I didn’t want. Begging for something that I hated the idea of having to have. Begging for something that I needed and had no other way of getting. I’d got the forms to apply for PIP but it takes months and I had two weeks. I cried a lot.

People were generous though. My friends, family,  people who surprised me as they’re not particularly close to me, people that obviously saw I had a genuine need and wanted to help. I got close to my target and bid for a scooter on eBay and won it. I borrowed the last few pounds and emptied out my bank account to make up for the 10% that Go Fund Me takes and I was so relieved, so relieved that it was over.

I’ve seen other disabled people sharing their PayPal.me addresses, accepting help graciously from kind benefactors for the multitude of costs that being disabled brings and I applaud them. I have a shopping list longer than my arm of aids and appliances that I need to make my life easier but I won’t be asking, I’ll struggle on. Though pride may well be the appendix of emotions I can’t see me getting an appendicectomy any time soon.

 

Raggy Dolly

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I’m a product of the 80’s; weaned on Smash and the best era of kid’s TV. My nickname of the last 6 years or so is Dolly. These 2 facts alone could be enough to justify the name of my blog but believe it or not there is more to it than that.

I’ve always been clumsy. I have scars that predate my memory, I broke my first bone at 5, was in A&E so much as a child that my parents were probed as to how I was always black and blue,  and I’ve been x-rayed in excess of 50 times in my life.

Over the last few years I noticed that I was increasingly getting joint pain, my always knotty shoulders ached even more than they used to, my knees and ankles felt weak and my clumsiness showed no sign disappearing. However three months ago things worsened even more.  I didn’t only have your usual aches and pains that I had put down to reaching the latter point of my 30’s. I had multiple, severe and sometimes burning pains all over my body. It was debilitating.

I saw a physio aged 19 following a shoulder injury and she had said to me that my joints were hypermobile,  she also said that this was a good thing as I would ‘break fewer bones and I wouldn’t get arthritis when I got older’. It was also a running joke with friends and family that I needed new ankles or that if you looked at me harshly I would bruise.

I’ve got quite a high pain threshold. I don’t really do tablets, martyrdom is much more my thing; but when the pain got so severe I couldn’t ignore it I had to go to the chemist. And when the chemist could no longer supply drugs to ease my pain I had to go to the doctors.  It was at this point I started to wonder whether my bendy joints could’ve been the cause.

I hadn’t realised that it wasn’t normal for your joints to lock in place or for them to regularly sound like the percussion section of an orchestra or indeed for them to give way on you when you are doing something as innocent as just walking. It was definitely normal for me.

It became clear that I wasn’t just any old Dolly but a raggy Dolly. Made imperfectly, as the song goes,  and that these imperfections may well be a part of me that I was going to have to get used to.

(The picture is of Lucy who was my favourite of the Raggy Dolls. Well, behind Sad Sack isn’t that ironic for someone who also suffers with her mental health. Lucy was so called because her joints weren’t fixed on properly like the other dolls and they usedto fall off and bend the wrong way; that’s how she ended up in the reject bin.)

Listen to Doctor Dumbledore.

Of course it is happening inside your head, Harry, but why on earth should that mean that it is not real?

I love that Dumbledore quote. I try and keep it as a mantra about my own mental health, to help me to see that what I experience is valid and real. Trying to view a mental health disorder in the same way I view physical disorders is still difficult for me. There is something of the stigma that trolls me about it. And yet right now I’m facing the closest thing to definitive proof that I’ve ever had. A medication that works.
I’ve been on my new pills for a couple of weeks now. I was wary of them as they are atypical antipsychotics and sounded a little hardcore for little old me but their effectiveness has been undeniable. I have more energy, I have clearer thoughts and I feel happier. So. Much. Happier.
My psychiatrist had said to me that the therapeutic/self help element to my getting better couldn’t start until biologically things were more stable and yet I’d still lost faith that they could be. I still kept thinking that I needed to try harder, needed to be better.
We need to stop thinking mental health is about strength and trying hard and realise it’s complicated, often biological and very very real.
You wouldn’t start physio on a limb that was still snapped in two so why attempt therapy on an unstable brain?
I’m very glad I have a medication that seems to help. I’m now faced with fear that it will stop and the unease I get at needing medication to stay well (more stigma trolling me) but at least I know there is hope. That it is real. And that there is a place for (the right) medication.

Suicide is Selfish?

I promise I’ll get back to blogging about magical cats or the diary featuring the exploits of girl about town soon, but for now I need to put forward my thoughts on suicide.

This was brought to the forefront of my mind because of the incident on a bridge over the M42 motorway yesterday and the Twitter furore that followed it. For any of you who don’t know what happened a man climbed over the barrier of a bridge running over the M42 and the motorway had to be closed as negotiations took place to get him to safety. It took hours. People stuck in their cars, people tweeting about the selfishness of the guy. “Jump already!” “Shoot him down!” Cries of attention seeking and the fundamental selfishness of suicide.

Is suicide a selfish act? It’s something I’ve pondered repeatedly over the years. Mostly because my dad committed suicide not long after my twelfth birthday.

My initial reaction was definitely to write it off as a selfish act, I spent my formative years angst ridden; how could he do it to ME? How could he leave ME? How would I cope without him. I thought this for years and years. In my early twenties I trained to be a nurse, I struggled if I encountered patients who had self harmed, who were suicidal; I came across many, I worked with alcoholics and drug users and I (in my head) labelled them as selfish and attention seeking. I was one of those people who didn’t feel sympathy if someone jumped in front of a train; I felt angry. What about the poor driver? What about the commuters? I’d tut, I’d mutter. So. Selfish.

Then, a few years back my marriage broke down. It was my choice, I was happy that it had ended but I decided that it would be a good idea to go and get some private psychotherapy and it was there that my opinion first began to falter. My therapist who showed me masses of empathy on issues I discussed with her turned around one day and disagreed with me. Well, I say she disagreed, I hadn’t actually sounded my opinion about how selfish my dad was but I had assumed that everyone would think that way. She didn’t. I remember everything about that moment: the sadness in her voice, the pained expression on her face, the words that I had never heard or thought myself ‘Your poor dad, I can’t begin to imagine how utterly hopeless he must have felt to feel that that was the only choice.’.

And it sunk in a little. What if he felt he had no choice? What if he hadn’t taken a decision at all but had found himself in a place where there was no answer in his mind but suicide?

My opinion started to wane, I stopped judging self harmers, I started to sympathise, I’d try to understand and then two years ago my understanding was brought into sharp focus. I became ill, very acutely mentally unwell. I experienced lows that I couldn’t have even imagined. I’ve been under the care of a complex care team since then and have a diagnosis of borderline personality disorder with anxiety and depression, the help is sporadic but it is more than my dad had, it’s more than many have, it might have been more than the guy above the M42 had, though that is just speculation. What I do know though is that suicide is often like my shadow, in my lows it taunts me. My dad was 39 when I lost him. I’ll be 39 when my own child is 12. That fact haunts me. The part of my brain that is controlled by the BPD tells me it is inevitable, a fait accompli. As that guy stood on that bridge for that 10th hour I felt sure that his jumping was inevitable too. He didn’t. He’s in hospital now. He’s in hospital because people were patient, people didn’t think he was selfish, people helped him.

My initial reaction to the Twitterati calling him selfish was anger, was disgust, was wanting to scream at humanity but as I’ve thought about it more I realise that it’s just ignorance, literal ignorance. I was ignorant too once, it took years to realise the real tragedy of suicide; education takes time, just like the time and patience those people who helped that guy off that bridge showed. Mental Health issues are far too common, it’s still seen as scary and taboo in our society which in turn causes ignorance. We need to put in the effort to get people to understand the reality. It really is time to talk.

The Physical Cost of a Mental Health Diagnosis.

This isn’t anything about my book. It’s not anything about me as a writer. It is about me as a person. A person with Borderline Personality Disorder, Anxiety and Depression.

There are many academic studies about the links between poor mental health and poor physical health, I’m not offering anything new, I’m just documenting my own experience.

I first started to think about this whilst walking to my GP this morning, I was seeing her mostly for a mental health review but was also thinking about some of the physical ailments that are plaguing me. I’ve long given up trying to get these addressed by my GP, I’ve become used to issues being put down to ‘stress’ but as I walked there I pondered on just what the physical cost has been for me.

I first got acutely unwell with a mental health condition two years ago and since then have continued to be so unwell that I have not been able to work, over this time I’ve noticed many changes to my physical health, many of which have become chronic. This isn’t a ‘woe is me’ call for self pity but it is a documentation of my own experiences that I guess I hope might make some people see the complexity of living with a mental health condition and might make others realise that it’s not just them that are caught in the catch 22 of mental health issues impacting on their physical health and vice versa. Perhaps there is even a part of me that hopes that by mapping it all out I manage to find a way of breaking my own cycle of ill health.

I have noticed that my physical health problems seem to stem from three areas: 1) The direct impact of stress/mental ill health on your immune system, 2) Self neglect, 3) Self harm. There is some overlap and I don’t claim to be an immunologist so a lot of this is anecdotal.

1) There are many resources about how stress affects immunity but in very simple terms stress hormones lead to the suppression of the immune system as it lowers the numbers of lymphocytes that you produce.

In me this has manifested in an increase in viral infections such as colds and vomiting bugs and a delayed recovery from such bugs. I also suffer with an increased number of mouth ulcers and skin infections; these are made worse by self neglect and in turn feeds into a negative self image and esteem issues.

I have digestive issues that are consistently put down to stress. At times of acute stress your body goes into fight or flight mode and part of this response can be to slow your digestion down, when the stress passes somewhat your body tries to compensate with speeding digestion up again. For me this affect manifests itself in alternating constipation and diarrhoea, bloating and sluggishness and gastric reflux, heartburn and frequent vomiting. It’s not much fun, and is something that I have to contend with daily.

I get eczema on my hands and feet at times of high stress. I have panic attacks that can aggravate my asthma. I get painful and ugly areas of psoriasis at the back of my head.

I also suffer with frequent headaches, insomnia and subsequent exhaustion, all of which are caused by the effects of stress and anxiety on the immune system.

2) Self neglect. This is a difficult one for me to admit to and is something that causes me a lot of shame. I’m not even talking about wilful self neglect, the issues I have are more caused by exhaustion and memory issues. A combination of my medication regime and my constant tiredness has had a negative effect on my short term memory, this can cause my hygiene regime to slide, I can forget to brush my teeth for days on end, leading to gingivitis, mouth ulcers and receding gums. It’s not that depression makes me not want to care for myself it’s literally that I forget to, then I see my poor dental health and I give myself a severe talking to and I decide it will change. Then I forget. It’s a difficult thing to explain and a painful thing to admit to. I suspect the small skin infections that I get, especially small spots that have plagued me across my breasts for over a year now, are down to me lacking in a good hygiene regime. It makes me feel disgusted with myself and yet is ongoing.

Lack of good diet and inactivity have led to me gaining four and a half stone over the last two years. I have no doubt that my poor diet and lack of exercise regime also impact on my digestive issues. My weight has caused an increase in joint issues and back pain. I’m noticing that I get increasingly out of breath, especially in the cold weather. I know what I should be doing but struggle with exhaustion and inertia, I suspect with large doses of shame stopping me from wanting to get out and exercise too.

Poor compliance with medication is something else I struggle with; I sometimes think that this falls into the next category of self harm but nine times out of ten it is due to either a bad memory meaning that I simply forget to take them and then a vicious cycle of a fear of side effects once I get back into following my drug regime. The biggest side effect I get comes when I miss just one dose of my quetiapine, I get drowsy, will sleep all day and this then impacts on my ability to eat well and be more active.

3) Self harm. I’m not really talking about cutting myself or overdosing; those are often elements of mental health issues and have featured in my mental health history but I am mostly talking about daily things that I do that I am doing to hurt myself and that I know impact on my physical health. Over eating is an obvious one. I hate my fat and yet I binge, I binge eat so that I feel even more justified in hating myself. Sometimes I binge eat until I’m sick. I tell myself that this is me trying to retain some form of control but I suspect it’s another way of me justifying self loathing. Self sabotage is another frequent mode with which I cause myself psychological harm; I understand that it is quite common with personality disorders, you set yourself up to an emotional situation that you know will cause you harm, you pick fights, you become needy, you put yourself in situations that you know you won’t be able to manage, By putting pressure on yourself and failing you then feel more justified in your negative images of yourself.

There are probably other things that I do, things that either I won’t admit to myself or just can’t see as harmful behaviour but I do see how my destructive streak can cause me to binge drink, binge eat and partake risk taking behaviours all of which have a negative impact on my life as a whole.

 

As I say I’ve not written this as a request for help or for a search for sympathy. My mental health follows peaks and troughs and as much as I know that I have a long way to go before I feel ‘well’ I know that I am taking steps towards recovery. Maybe me acknowledging how all encompassing it has become will be another step. I can but hope.

 

An Artistic Temperament?

In June 2011 my life was very different to how it is now. After the breakdown of my marriage in 2009 I had managed to pull myself together and become a successful working single mother. I was a clinical nurse specialist in palliative care at St. Thomas’ Hospital. It was my dream job. All was good.

Well, apart from the increase in anxiety that I’d felt and the panic attacks that started sneaking in.

The panic started to get so bad that at work I would hide in the toilets and pray that no one paged me. I had friends I could talk to, my manager tried to be supportive though obviously she had a service to deliver and my emerging illness was interfering with this. As my health got worse I turned to the Samaritans, when I’m unwell using the phone causes me massive anxiety so I exchanged emails with an anonymous ‘Jo’. I knew that each ‘Jo’ I spoke to was a different person but ‘Jo’ was still a huge support.

Despite me talking my despair through with the ever understanding ‘Jo’ in late June I hit crisis. My head went to the darkest place it has ever gone to. I was terrified. Luckily I had a friend, Emily, who had experienced mental health problems herself and she fought tooth and nail to get me the help that I needed.

I lost my job. Probably for the best. Even with help I had to admit that I was very unwell, years of supressed emotions had come rushing out and my life would never be the same.

I’ve had two years now of not working, of being in constant contact with psychotherapists, psychiatrists, the wonderful people at Mind. I now have a diagnosis of Borderline Personality Disorder and still struggle with my condition.

One thing that has helped me through has been my writing. Since I’ve been unwell it’s been the thing that has given me an outlet, it’s given me an identity away from motherhood, away from my illness, something to hold up and be proud of.

You read a lot about people with mental health conditions being artistic, hordes of celebrities have regular walks with the black dog; I’m not sure if there is a correlation but a friend of mine who also has BPD suggested recently that the BPD was a tax on being fabulous. I’ll take that.

http://www.samaritans.org/how-we-can-help-you?gclid=CKz9voPIp7gCFQTMtAodcVkAkQ

http://www.mind.org.uk/

Tiger Tiger is available in the Kindle Store: http://www.amazon.co.uk/gp/product/B00D5EYHAM/ref=cm_cr_mts_prod_img