Universal Credit Saga: Part Three

It’s approaching three months since I first started the universal credit process, after being medically signed off work, on long term sick leave. In that time, I have had two commitment meetings with my work coach, which destroyed my confidence and made me feel like a failure and a burden on society. I have been told that despite medical evidence, written from my GP, who has known me 10+ years, stating that I am unwell, with suspected gastroparesis, I am available to have interviews immediately and I am available to start working immediately.  According to the NHS MUST Tool which measures malnourishment, I am at high risk of malnourishment, increasing my risk of sudden death. I’m sure that you can understand that hearing this information has been, in itself, traumatic.

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Despite all of this, I have been told that I have to think about how I’m planning to get back into work. Being off work is not a lifestyle choice, however it would appear that being unwell isn’t a valid reason to not be in work. I’m meant to be job searching every day. I’ve tried to do this, but the reality is that I am not well enough to be trailing through websites to find work and I also find it an incredibly demoralising experience, looking at all the jobs that healthy me could do, but are an impossible task for me when I am this unwell.

I’ve also been told that I need to be prepared to travel up to 90 minutes, when job hunting. When I was informed of this, I questioned it, due to the fact that I cannot travel for three additional hours in total. I have a car and I can drive, however, due to EDS, I experience joint dislocations daily. Driving long distances puts more pressure on my joints and I refuse to put myself or other road users at risk, by driving for longer and potentially experiencing joint dislocations. Can you imagine the potential danger if I was driving on the M40 to London and my knee or hip dislocated?

When I saw my work coach last week, to hand in my latest sick note, I had made the effort to look a little but more presentable, as in, I was wearing something other than tracksuit bottoms and had washed my hair. My work coach told me that I “looked better”. That’s the beauty of invisible, chronic illnesses: you can’t see them. It’s like being an idiot, you can’t always tell that someone is an idiot by sight, but that doesn’t change the fact that they are an idiot.

When I first started the Universal Credit application, I have no idea how difficult the process would me. It still makes me so sad and angry that disabled and vulnerable people are being failed by a system which is meant to be helping them. As I have said in previous posts, the whole application has had the affect of making me more unwell and dealing with the feeling of being such a failure has been hard to adjust to. The support that I have received from people has, honestly, been overwhelming. The Mighty have published my original open letter to Theresa May and I have been approached by other agencies and I am still deciding the best way of moving things forward in that respect. I know that I am just one person, except what I have experienced are not experiences that are isolated to just me. The system is broken and I am determined to fight the unjust nature of a system which should be helping, not penalising people. I’m not just fighting for me, I’m fighting for the people who are unable to fight themselves.

But I accept that I am just one person and I don’t have the power to make the changes that I desperately want to make.

So, where do I go from here?

As well as sending Theresa May a copy of my letter, I also sent a copy to Layla Moran, my local MP. I received a reply from the prime minister’s communications offer, telling me that Theresa May appreciated my letter (I think not), it had been passed onto the DWP and that I could expect a reply from them. As of the 24th April, I am yet to have a reply from them.

I had a more positive response from Layla Moran and would go as far as saying that her support and overall kindness made me a little emotional. She was very honest and fair in her responses to me: it is incredibly unlikely that the Universal Credit system will be abolished due to the fact that the Conservative government have invested millions and millions of pounds in the implementation and the rolling out of universal credit, as well as investing further large sums of money into “fixing” the problems that arose as a result of the system. However, oppositional parties have succeeded in managing to secure changes to the Universal Credit scheme, to hopefully make it fairer and less traumatic for genuinely disabled and vulnerable people who are in the process of applying. As well as this, I have been assured that all Universal Credit problems are noted. Stephen Lloyd MP leads on social securty benefits for the Liberal Democrats in Parliament and he routinely questions Government ministers about Universal Credit implementation. Layla is also in the process of chasing up my reply from the DWP.

Layla Moran also validated the fact that I’m unwell. I hadn’t actually realised that the demoralisation from the commitment meetings had resulted in me feeling like a fraud and not sick enough to not be in work. My work coach does not have a medical degree and has next to no medical knowledge, but his attitude, combined with the system in general, has made me question on more than occasion if I had the right to be trying to claim benefits, to financially support myself at a period of time when I am too unwell to work.

I am unwell. In fact, I am really unwell. I did not ask to be in this situation and more than anything I want to be working.

Today I received a questionnaire asking me about my health conditions and my answers on this will depend on whether I need a full work capability assessment. It’s a similar form to the PIP form, which my life slightly easier and I’m hoping that a combination or my answers and medical proof will be enough to evidence to show that right now, I can’t work.

It remains a slow and somewhat painful process but people are fighting to make the system more just. I’m still fighting and dare I say it, members of parliament are fighting too. It might not be front page news, but it is happening and I’m not giving up.

Grieving For My Old Life

The grief cycle, following the death of a loved one is something that we are probably all familiar with. When the chronic illness diagnoses started rolling in and in the years running up to diagnosis, my life changed drastically. As a teenager, I was dancing (ballet and Irish dancing), playing netball and hockey, trampolining and either cycling or walking two miles, to and from school every day. On the surface, I appeared fit and healthy, but was constantly being labeled as clumsy, thanks to a catalogue of weird injuries, resulting in me annoying the school matron and many many trips to minor injuries and the emergency department.

As I progressed through secondary school, I was displaying more and more symptoms of Ehlers-Danlos Syndrome, but because no one was looking for it, I remained undiagnosed until the age of 22.

By the time I reached my GCSE years, I was fighting kidney, throat and ear infections more often than I wasn’t fighting them, I had periods of extended and unexplained dizziness and my joints (in particular my fingers and right knee) started to do their own things, with frequent dislocations and constant pain. Things went downhill further when I was in 6th form, I’ve genuinely “lost” about six months of my life, at the age of 18, because I was in so much pain and the combination of all the medication I was in and battling through A Levels, despite being told to take a year out. I can’t remember taking my final A Level exams, which isn’t a bad thing to be honest but I’ve lost other memories which would have been nice to have.

So because of all of this, getting a diagnosis of EDS and fibromyalgia at the age of 22 should have been a relief. In part it was, I finally had reasons as to why I felt so rubbish at times. I wasn’t imagining my joints popping in and out, it was actually happening. I wasn’t being pathetic when I was ill, I have a weak immune system. The pain wasn’t in my head, it was real. But at the same time as the rush of relief, being told that I have life-long illnesses which are probably going to get worse felt like a door being shut and locked on my past life.

I hadn’t ever considered the fact that I was going through a grieving process for my healthier teenage years. It wasn’t until my physiotherapist pointed out that I was going through a big adjustment in how I lived my life and that I needed to take time to come to terms with that and grieve. I struggled to get my head around that initially, I wasn’t dead and I wasn’t dying but I wasn’t going to get better.

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Personally, I haven’t found the grieving process for my old life linear. Some days I can be rational and logical about things, other days I can sit and cry and mourn, although the latter is becoming rarer.

I still struggle with the concept that I am not the same as my friends. Because of this, I can be reckless and not look after my body, which results in me ending up bed bound to recover. Sometimes, I can’t make sense of what is happening. I try not to go down the “why me?” route, but being the only person in my family with EDS is hard to get my head around. At times, I have pretended that I’m not ill and if I’m honest, that doesn’t tend to end very well. Sometimes I am numb to all feelings surrounding chronic illness, I like to think that it isn’t there. There are days when this thought process makes life possible: it allows me to get from one day to the next with as little fall-out as possible. Denial isn’t always healthy, but I see it as a basic survival method.

I’m not an angry person. It takes a lot for me to feel anger about a situation, partly because I don’t like the sensation of being angry. But, there are times when I could happily go on a rampage, screaming and swearing about how unjust everything is. Again, this links to the “why me?” thought process, something that can’t ever be answered. A sure-fire way of anger surfacing is when someone makes uneducated and insulting comments about illness. You think that I’m lucky having afternoon naps or needing to spend the day in bed?  It is natural to feel deserted and abandoned- the majority of the time, we live in a society that fears anger. Anger is strength and it can be an anchor, giving temporary structure to the nothingness of loss or overwhelming change.

Before being diagnosed, I found myself bargaining with myself, as a way of preventing the earth-shattering news of a label. I was in a very conflicted place, both wanting a diagnosis and fearing it. If I looked after my body better, it would stop me from being unwell: I would swim every day, eat clean, take all the supplements and actually listen to what my body was telling me. I wanted to go back in time and not dance as much or do sports which put unnecessary strain on my body. Finding fault in my actions and choices as a child and teenager were not the reasons that I developed EDS, I can thank gene mutation for that. Maybe things would have been different if I didn’t do ballet or Irish dance, or tap and modern dance as a child, then possibly my joints wouldn’t suffer so much as I got older. But I enjoyed dance so I try not to view it as something that I regret.

The depressive stage feels as though it will last forever and I think that at the moment, this is the stage that I keep revisiting. It’s important to understand that the depression around diagnosis is not a sign of mental illness. It is the appropriate response to a great loss or change and that does not make it any less valid. I’ve found myself withdrawing from life, left in a pit of intense sadness. I’m not dead or dying but a chronic illness can, at times, feel like a life sentence. The uncertainty is scary, I can’t predict from what day to the next how my body is going to feel or how much pain I might be in. It’s hard trying to make plans and then needing to cancel because I’m too unwell. I’m not a flake but sometimes it looks like that, more so because I don’t look sick, so there isn’t any obvious evidence to me feeling horrendous. It takes a very understanding family and friendship group to pull you through the depression.

Acceptance is often confused with the notion of being “fine” or “okay” with what has happened and the new diagnosis. This is not the case. I don’t think that I’ll ever feel fully okay about chronic illnesses. I don’t like my new reality but I’m learning to accept it. I’m learning how to make acceptance easier: having friends who are going through similar helps so much. They understand on a level that no one else does. I’m also learning that not everyone will get it and that’s more of a reflection on them than it is on me. When possible, instead of denying my feelings, I listen to my needs and I change and adapt my lifestyle. I am able to start living as well, with a different set of goals and dreams.

I am not the healthy person that I was ten years old, but slowly, I am adapting to that.

 

This blog post will feature on The Unchargeables

The Problem With “Me Before You”

Warning: this post talks about suicide.

I’m going to hold my hands up right now and apologise for the fact that this is going to be somewhat controversial. Me Before You is, in my opinion, a bit of a marmite book/film: you either love it or hate it. So, to all the fans of Louisa Clark and her bee tights, I’m sorry for my upcoming rant.

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Personally, I’m not a huge fan of the book or film. I read the book purely because there was a massive hype about it and I wanted to see what all the fuss was about. It’s not my usual genre, chick flicks that fail the Bechdel test are normally avoided, but enough said about my inner feminist feelings.

My issue with the book and film starts with the promotion in the run up to the film adaptation being released. The production team came up with the hashtag #LiveBoldly, whilst promoting the life of a previously healthy man, who became disabled (quadriplegic) following a road accident and was therefore considering assisted suicide in Switzerland. That in itself is a bit of an oxymoron: can you really #LiveBoldly when your aim is to die?

At this point, I want to make it really clear that I do not have an issue with assisted suicide or euthanasia.

But was the underlying theme #LiveBoldly or dying quickly? A disability is not a reason to not live a fulfilling life. Being disabled does not automatically mean the taking away of potential, hopes, dreams and aspirations. And leading a fulfilled life is something that is promoted so heavily in the book.

I have a bigger problem with the fact that Louisa was left a substantial amount of money in Will’s will. Will dictated that he wanted Louisa to swap her boring and stagnant life for one full of adventure and possibility, visiting all the places that she only dreamed of visiting.

Can a person only #LiveBoldly if they are able-bodied? So, whilst Louisa does get to go on her great adventure and experience a life full of excitement and opportunity, this is at the cost of another person’s life. The message that is being given here is that an able-bodied person’s life is valued more in society that someone who has a disability.

People with disabilities are not your reason to cry. People with disabilities are not to the pitied or killed off, in order to give a book or film an emotional ending. People with disabilities are not the reason for making a book a page turner.

The problem could be lessened, if not solved, by the presence of just one disabled character to provide some contrast and show that suicide isn’t the only option. Will is deemed to be a strong and determined man: if a strong and determined man can’t cope with a disability than how are mere-mortals meant to cope? In both the film and the book, Will is portrayed as isolated and as someone who is encased in negativity with very little hope. No wonder his only solution was suicide: this simply is not the reality of all people with disabilities and it’s giving a very one-sided view on being disabled. There are a disproportionate number of stories which relate to the “problem” of disability being “solved” by death. Books, TV and films seem to love the idea of people dying and gaining freedom,

The recent death of Stephen Hawking has showed how this view point has been carried into the real world. When he died, people were saying that he was now free from his wheelchair. The reality, however, is that Professor Hawking saw his wheelchair as something that gave him freedom, not something that restricted it. It allowed him movement, speech, the ability to teach, develop world famous theories, to be a father, husband, son and scholar.

Suicide is still a taboo subject. When able-bodied people talk about suicide, they are discouraged and offered preventative support. If an able-bodied person commits suicide, without the assistance of another person it is legal. When a disabled person has the consideration, the issue becomes more focused on autonomy and being of sane mind but very rarely is a person offered the same level of psychiatric support. Are disabled people less worthy?

On a more personal note, I have struggled with suicidal ideation off and on for a number of years. If I was to say that the reason behind those thoughts and feelings was because of X Y and Z from my past, I would be offered interventions, a crisis plan would be written and there would be a discussion about how I could be helped. However, and this is the important bit, if I was to say that I was feeling suicidal because of disability or chronic illness, suddenly, that isn’t as concerning. I have said that and I was genuinely told that it was “understandable”.

So yet again, we are faced with the question of are disabled people valued less? According to Me Before You, it suggests that and that is not a message that should be given through popular culture.

 

 

2018, you’re being a bitch

warning: this blog post talks about vomit. 

 

It’s hard to believe that we are only two months in 2018. Honestly? So far, it has been pretty shit. I’m jokingly referring to 2018 as the year that I just get sicker. Only it’s not a joke, it’s true. I’ve spent more time in hospital or in bed than I have done anything else.

The year didn’t start off particularly well, somewhere around the second week of January, I slipped back into a mental health crisis. It’s not something that I have spoken about very much, mainly because my physical health has since taken over. But I was very depressed, looking back I don’t think I had been that unwell since my final year of uni, which was a pretty turbulent time, for me and everyone around me. This time round, the depression, anxiety and OCD turned me into a not very nice person. I became very anti-social, withdrawn, isolated…you get the picture. I hid in my room because the real world was just too scary to be part of. I missed birthdays, nights out and I wasn’t around when some of my friends needed me. The crisis seemed never ending. I didn’t have anything to work towards and everything just seemed pointless. I should have invested shares in dry shampoo because I used so much; why would I want to shower and wash my hair when it felt like the world was collapsing and likely to end, imminently.

And then there is the mess that is my physical health. Over Christmas, I started struggling with sickness. I think the point that I realised something was wrong was during a family mean in that limbo-time between Christmas and New Year. I. Was. So. Sick. Prior to that, I had struggled off and on with unexplained sickness, but this time, my body really has been taking the piss. Fast forward two months and I am still being sick. I’ve been in and out of hospital, to be pumped with fluids and anti sickness medication, had an endoscopy, been referred for a colonoscopy and after an urgent referral to gastroenterology, we are slightly closer to getting answers, although, yep, you guessed it, I’m still being sick. That gastroenterology appointment is a bit of a blur, I was being sick every 10 minutes (I was there about 5 hours in total…that’s a lot of vomit) and I really lived up to my nickname of Vomit Queen. No-one steal my crown because that’s all I’m good at right now. I need to have an gastric emptying study and that should, finally, give a definitive answer about what the hell my body is playing at. The news that I need to eat a radioactive egg sandwich for this hasn’t filled me with joy. Egg sandwiches are bad enough without adding a radioactive substance to them.

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It’s all been pretty horrific and scary. When I was diagnosed with Ehlers-Danlos Syndrome, almost three years ago, no one explained the condition well to me. I thought it was just a case of having unstable and wonky joints. How wrong was I?! EDS has taken over my life. It feels like I have a monster inside me, which is taking over every part of my body. Wonky joints are now the least of my worries: plummeting blood pressure, constantly being tachycardic, orally evacuating everything that I try and eat and drink is much more scary. Never in all my life did I think that I would be praying for food/drink to head south and be poo-ed out, instead of shooting north again via my mouth. Today I made the choice to formally withdraw from college. It was that or be kicked off my course (counselling skills) for poor attendance. I’m devastated, because this is yet another thing that my [lack of] health has taken away from me.

It’s been hard going for my mum as well and I think that is what I am finding hardest. When I first started to become unwell, around Christmas, I was having symptoms that closely mimicked irritable bowel disease, in particular colitis. My dad and various other members of his family have/had colitis and in my dad’s case, this resulted in him getting bowel cancer and passing away at the age of 38. So, seeing me having the same symptoms as him has been hard going for my mum. I feel so guilty seeing how exhausted and wrecked this is making her. We both share a level of relief that this is unlikely to be IBD, although the likely diagnosis isn’t any less scary.

Whilst I don’t want to make the end of this blog post sound like an Oscar acceptance speech, I do want to quickly thank everyone who has supported me through this hellish period. Because it’s been hard. I miss my old life: I miss dancing, playing netball, trampolining, not being exhausted 24/7, having a social life, being able to work, having freedom and aspirations. Thanks for sticking by me, normal service will resume at some point…hopefully.

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“I’m 24 and I’ve got everything to live for”

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So today I am 24 years old (or at least it’s today at the time of writing this). It’s been a tough couple of weeks and I’ve found the whole birthday thing hard to get my head around: I don’t feel like celebrating or worthy of attention/love/kindness however the rational part of me knows that I have some really really wonderful people in my life and it is okay that they care for me and want to acknowledge the day.

I think I’m probably at the age now where I need to accept that I am a proper adult. No more kidding about. I can’t go on nights out anymore and drink copious amounts, mixed with sourz shots and be okay the next day. I have rent and bills to pay. People keep asking me when I’m going the Settle Down and get married and provide my mother with grandchild. Children where I work with weren’t alive for the millennium and think that I’m old. One child went as far as asking me if freezers were around when I was a child.

But what is the reality?

I definitely don’t have my life sorted. Having children and getting married couldn’t be further from my mind. I want to pack a bag and go traveling, not be changing nappies. I have crap sleep anyway so I could do without adding a child to the mix. There’s so much pressure to confirm with society’s norms, sure I want to marry and have children but not yet. I need to sort my own shit out before I try and parent a child. And that isn’t selfish, it’s honesty.

I have no idea what I want to do with my life. At all. I had planned on returning to university and had a conditional place at the University of Oxford, to do a masters degree but for various reasons, this has fallen through. I’m annoyed but it isn’t the end of the world because I wasn’t 100% sure it was the right thing to do. I love my current job, but it isn’t a forever job. My mum likes to talk to me about life goals, I would rather talk about literally anything else.

What have I learnt in my 24 years of living?

It’s okay to not have everything sorted. I’m fine with saying that a lot of things in my life aren’t sorted, I don’t know when they will be sorted and I don’t know what I’m doing half the time. I’m a pro at bullshitting my way through situations.

Asking for help shows bravery, not weakness. No one can ever be expected to always do things alone. I can’t change a car tyre and probably never will be able to. Sometimes I’m not well enough to look after myself and whilst admitting that can be scary, it is the best thing to do. I can cope very well in the crisis when it involves other people but I am awful at dealing with my own because…well…I just don’t deal with them. On the same note, the NHS is fantastic.

I’m not always going to be right. But I do hate being wrong.

Sometimes, you just need to laugh at a situation.

Not everyone will have your best interests at heart. Some people are nasty and aren’t worth your time. That includes boys/men who use you for sex, girls who are two faced and bitchy and random people who pass judgement.

You will get your heartbroken but you will get through it.

Green eyeliner is not okay.

The internet is a blessing and a curse. I have met some of the most amazing people through the internet. I’ve also met some compete wankers.

You will learn a lot more from a book than you will from watching Eastenders/Hollyoaks/Coronation Street. Unless it’s written by Katie Price.

Death is inevitable and grieving is a slow and very personal process.

Listening to my body is not a bad thing. When it hurts I need to take note and stop pushing it to the extremes.

Exam results do not define you but your experiences in school are foundation blocks to your future.

You won’t find answers at the bottom of a wine bottle (or gin) and searching for answers there will probably end in tears and hanging your head over the toilet. But we’ve all been there.

You can’t choose family so be grateful for family members who aren’t morons.

Sometimes, the only thing to do is to chill the fuck out and remember that eventually, things will fall into place and it will be okay.

Skye Has No Limit

I’ve spoken on numerous occasions about Blue Skye Thinking, a charity set up in memory of Skye Hall, who was diagnosed with a brain tumour ahed five and sadly passed away less than a year later from radio-chemo neurotoxicity. The aim of Blue Skye Thinking is to support the research and treatment of childhood brain tumours and ultimately, to give children like Skye a better chance of survival. It is also a way of ensuring that Skye and his courage is remembered; he truly was an amazing little boy.

Having got to know Skye’s family pretty well, I have become more and more passionate about raising as much money as possible for the charity. I recently promised Sally (Skye’s mum) that I wouldn’t ever stop talking about Skye or Blue Skye Thinking. The latest appeal for Blue Skye Thinking was launched a couple of weeks ago. Aim Skye High is encouraging people to come up with wacky and crazy fundraising ideas, with the goal of raising £50,000. The more wacky the better, because wacky = publicity and that is crucial in continuing with the fundamental targets of Blue Skye Thinking.

My previous fundraising efforts have seen me abseiling down the Spinnaker Tower and having eight inches of hair cut off to be made into a wig, by the Little Princess Trust, to help a child who has lost their hair through illness. People who know me won’t ever let me forget who emotionally traumatising I found having my hair cut off, the only thing that prevented a full on meltdown was knowing that my hair would be helping a poorly child and in reality, they needed my hair a lot more than I did.

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charity haircut for Blue Skye Thinking and Little Princess Trust

 

So when I told Gill (hairdresser, general hero and gossip queen) that I have come up with my latest fundraising idea, I can forgive her for looking somewhat terrified. I quickly reassured her that my hair would be remaining on my head and that this idea is less traumatic for all involved.

The 5th November would be Skye’s 8th birthday and for a while, I have wanted to do something to mark this. When the Aim Skye High appeal was launched, things slowly fell into place and my latest idea came about.

To mark Skye’s 8th birthday, I will be swimming 8 kilometres, to raise money for Blue Skye Thinking. The actual time/date/location are yet to be confirmed and whilst emotionally, this isn’t such a huge challenge, my various health conditions will mean that this is going to be bloody hard work. I’m not entirely sure how well my body will cope…or if it will cope. I’m training hard and can comfortably swim 2km but I still have a long way to go.

Am I scared? Yes. Very.

However, Skye fought so damn hard against the biggest cancer killer in children so, if I can share even a tiny bit of that strength then I know that I can do this.

This is where I start begging, because I can’t do this without you. The money won’t be helping me but it will be helping children like Skye and families like the Hall family and the other families who are currently going through hell.

If you would like to donate, you can do so here or via Just Giving text, by texting LCBS48 £2 to 70070 to donate £2 (or enter whatever amount you wish). Every little helps and it will make a huge difference to the children diagnosed with brain tumours, as well as their families. Give a child a better chance of survival and continuing with their childhood, please.

If you’re unable to donate with dollar, I’m hoping to have a little cheer squad and your cheers might be the one thing that stops me from drowning.

As always Skye, this one is for you.

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Swings and Roundabouts

I wrote a blog post a few weeks ago about the importance of acknowledging when things are good or when life is going well. The same can also be said about the opposite, when things aren’t going so well and when life becomes an uphill battle. In the case of acknowledging the bad times, a lot of it relates to self care and knowing how to look after yourself and if necessary ask for help.
The last couple of weeks or so have been hard. There hasn’t been a specific trigger, I was conscious that starting therapy could cause a wobble, but I have been incredibly lucky to have an understanding therapist who hasn’t pushed me into talking about things that I’m not ready to talk about, meaning there isn’t any anxiety about appointments. The first two sessions progressed in quite a clumsy way, broken up by me filling the awkward silences by saying “well this is awkward.” Any silence to my ears is awkward, simply because I don’t like it. But I’m learning to accept it.
I just feel sad. I don’t know why. I feel very anxious. I don’t know why. Things feel a bit hopeless and life is a mixture of sleeping, working and medical appointments. And by sleep I mean artificially induced sleep because I am incapable of naturally sleeping for more than two hours which certainly does not improve my mood. A few weekends ago, my artificially induced sleep extended from Friday evening to Monday lunchtime, punctuated by doing a wee, feeding my cat (only after he had woken me up by chewing my hair) and trying to stomach a meal. The most frustrating part was, I was still exhausted, mentally and physically.
Anxiety has dipped in and out of my life since I was a teenager. It appeared at all the predictable times: exams, exam results, my fear of mice, grandparents being ill and personal illness. I could deal with that, anxiety was to be expected. Anyone who can walk into an exam hall with their shit totally together and not plotting on blowing up the headquarters of AQA or Edexcell deserves a champagne toast.
More recently my anxiety has manifested in other ways and isn’t so “normal”. Leaving the house is hard, unless I’m going to work or for a medical appointment. My pulse rate shoots up, breathing becomes rapid, I get sweaty and feel dizzy. These are calmed down by driving, but on arrival at my destination, I feel like I’m going to collapse, so I have to hope for the best.
The thought of going to sleep scares me because of nightmares.
I’m having to double and triple check things at work, almost obsessively to make sure I haven’t made a mistake. I have a routine which I need to follow and when following that, my pulse rate shoots up, breathing becomes rapid, I get sweaty and feel dizzy.
I’m scared that people hate me. This ordinarily wouldn’t bother me, I can’t ever please everyone and the reality is, some people would choose not to have anything to do with me, which more often than not, is reciprocated. I’m scared that I’ve done or said something really awful and can’t remember. I’m especially scared of my mum hating me.
I’m anxious about finances.
I’m anxious about the future.
I’m anxious about my health.
I’m anxious about being anxious because it’s taking over my life. I miss my friends and I feel guilty that I don’t feel in a place to be able to go out to the pub and do the stuff that a non-anxious me would do.
Whilst I undoubtedly feel really rubbish at the moment, there are things that I can do to help myself. They can be trivial things or something with a bit more clout. A previous mental health team referred to these things as protective factors, which I guess they are, but they are also ways in just looking after myself, even when that feels impossibly tough.
Spending time with my cat makes me feel happy and safe. Watching him play makes me laugh and hearing him purr is one of my favourite noises. Cuddling up with him in bed and putting the TV one is one of my main distraction techniques. I don’t have the concentration to focus on a film (unless it’s something like Lizzie McGuire) so I’ve settled for watching all five series of Outnumbered, on a loop, or making my way through Absolutely Fabulous. I love reading and always have done, but the same applies with concentration, so I have downloaded some audiobooks and can listen to them, whilst curled up in my den-like bed. Dawn French narrations are particularly good.
I like to go swimming and rely on old fashioned endorphins to do their job and cheer me up. A post-operative infection has now cleared up so tomorrow I can have my first swim in months!
Basic self care is crucial whatever your mood, but perhaps more so when you feel shit because looking shit is not going to improve anything. It’s something that I really have to force myself to do and I won’t lie, my consumption of dry shampoo sees a dramatic increase. My legs are a bit more hairy lairy and I’m less fussy about my makeup. Fortunately I have good skin so can just about get away with only my eyebrows being sorted and some mascara slapped on.
Forcing myself to see friends, whilst initially is leads to almost unmanageable anxiety, is worth it in the long run, especially when I see friends who understand me and never fail to make me laugh. A wonderful friend is coming to stay this weekend and I’m sure there will be plenty of laughter. During times when socialising really does feel impossible, I know that I need to make an effort to maintain some form of communication with my friends going. Making phone calls is a big no for me, so I rely on texting. And who wouldn’t want to receive a text about one my students turning up to school dressed as the grim reaper on home clothes day?! Scintillating stuff.
Most of all, and this has come with time and many learning experiences, I need to know when to ask for help. I think that is the most vital part of acknowledgement. I can’t always face this alone, nor should I have to. I have people around me to make sure I’m alive, safe, coping etc. I have people who strategize with me, to help me stay above weather, or at least float in a dignified way. They can’t wave a magic wand and cure me and that is okay. Maybe not tomorrow, but it will be okay.

 

 

To dads, step-dads, grandfathers, guardians and mums-who-are-also-dads


Today is Father’s Day in the UK – the one day every year that I reminded by constant updates on social media that I am not from an average family, with two parents and 2.4 children.

It’s just my mum and I. I say “just” but my mum has raised me, as a single parent for the majority of my life. Not by choice, she took on the role of mother, father, advocate, rule-maker, disciplinarian, teacher, doctor…I could continue. My dad passed away two days before my first birthday, after a short but ultimately fierce battle with bowel cancer.

I don’t really have any memories of my dad, but I have been lucky to have been brought up in a family whereby death isn’t a secret and the memories of the deceased are shared, amongst much joy and laughter. So whilst I didn’t know my dad in person for long enough to make memories, I do know that I am just as, if not more, sarcastic than him. I am witty and blunt like my dad was. I am loyal and will do anything to protect my friends and family: heaven help anyone who upsets my mum or closest friends. My dad would go out of his way to help people and it didn’t matter if they were life long friends or had only passed each other in the street. When he was ill, he saw a woman stood by her broken down car. Despite his own problems (and I’m pretty sure dying is classed as a problem) he stopped, pushed her car out of danger and waited with her until help arrived.

I don’t proclaim to be a saint, but like my dad, I have put myself in situations with could put my own safety at risk. Helping a young woman who was a drug addict, who collapsed and had a seizure comes to mind. My mum was livid when she found out that I had spent my Saturday sat in an ambulance, accompanying her to hospital because I didn’t want her to face it alone. She was also livid when she found out that my dad had been pushing cars around and standing outside during winter.

My dad was determined, hardworking and always wanted to better himself. He was born and raised on a council estate and with very little encouragement, got a place at what was the local grammar school; the only child out of seven siblings to manage that. He didn’t go to university, purely because it didn’t interest him. Instead, fresh out of school, he went about setting up his own carpentry business. I didn’t inherit his carpentry or design skills…I struggle to draw a stickman, but there is a nerdy part of me that finds machinery and engineering fascinating. I just don’t have the mathematical or scientific ability to make a career out of it. He carried that determination through his battle with cancer. He was a father and husband first, a cancer patient second and a terminal cancer patient last. For as long as possible, he remained an active dad and I know it pained him when he had to step back and let my mum take control.

Apparently, I look like my dad. Without sounding all “boo-hoo, woe is me, my dad died”, losing a parent, isn’t easy. My dad’s side of the family hold a lot of resentment over his illness and death, most of which is dirtied towards me, which has led to me cutting all contact (if that’s what you class the occasional card on a birthday) for my own well-being. That makes me sad, I don’t need to have firm memories of my dad to know that he would be deeply unhappy with the family separation and the fact that I have now chosen to use my mum’s maiden name. He would be horrified knowing that my mum was abandoned by his family and received next to no support in the early days after his death. And he would also be horrified knowing that his siblings have refused to have contact with me because I look too much like my dad. I realise that people grieve in their own ways and everyone’s feelings are valid, but at almost 23 years after his death, I still pine for a paternal family which I have never had. I am eternally grateful for the family I do have and the friends who have become family.

The bond that my mum and I have is pretty unique. We are very close, in some respects maybe too close; one of my biggest fears is letting my mum or dad down. My mum hasn’t been a perfect parent, we both acknowledge that, but she has instilled a sense of justice and fairness in me, that I know she learnt from my dad. She has loved me unconditionally and has always put me first. I can only imagine the inner sadness she must feel and I truly admire her for not giving up and still getting out of bed and facing the world, even on the worst days. I know that she feels a level of guilt because she wasn’t able to give me a “proper” first birthday, but to me, that doesn’t matter. She’s given me a lifetime of love, care and safety…I can forgive her for one birthday which I wouldn’t remember anyway! She has stood by me during [most of] the bad times and forgiven my mistakes – piercings not included.

If you’re celebrating Father’s Day, spare a thought for those who aren’t able to, for whatever reason. Don’t leave it to one day a year to tell your parents that you love them. They need to know that every single day, you’ll miss them when they’re gone.

To all dads, step-dads, grandfathers, guardians and mums-who-are-also-dads, alive or dead, big love and thank you for all that you do.

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The Last Goodbye

Life and death go hand in hand. As with life, death is unavoidable, cruel and spares no-one.

Last summer, I lost a close friend to suicide. It’s not the first time someone close to me has taken their own life, but nothing will ever prepare you for the news of such tragic news about a loved one. N died when I was 15, K died when I was 22. Seven years in between the two, but more or less identical feelings.

Guilt.

Anger.

Blame.

So many unanswered questions, which to this day remain unanswered.

I will never know exactly how N felt, although I, along with others, firmly believe that her death was the result of a huge cry for help, gone very very wrong. There had been no indication of her levels of despair and inner-most turmoil, but even as I write this, I end up thinking that there must have been signs or manifestations in her behaviour which could have suggested how unhappy she was. As one of her closest friends, I still feel that I should have noticed something; was she shorter in her texts, less willing or open about her life, dismissive or changing the subject to talk about something other than her? I read and re-read texts, emails and saved instant messenger conversations that we had had in the weeks and months in the lead up to her death no matter how much evaluation and analysis I did over her words, I couldn’t find a single word which suggested what she was planning. Like most other sixteen year olds in the final run up to GCSE examinations, she was stressed and preoccupied by revision and the need, want and desire to achieve. Talking about my disgust in academic expectations and the stress they unfairly place on young minds is a whole other post, but I will say this: N was predicted 11 A* grades in her GCSEs. She went to a very good independent school, whereby anything less than a B (if you’re being generous) was treated as a fail. N felt the pressure, we did know that much. She wasn’t stupid, anything but and she worked damn hard…but she was realistic and knew that chances of achieving a straight set of A* grades was unlikely. So, by the age of sixteen, in the eyes of education and the government, she had already failed. A harsh lesson to have learnt, by the age of sixteen. There is a small mercy that N’s school made changes after her death. I’m told that their pastoral and support network within the school improved drastically and that students are now given emotional and mental support as part of the GCSE package.

But other than that, we won’t ever know how N felt. I hope to this day that she was at peace with herself, that she wasn’t lonely or scared. We’re told that she didn’t feel anything and wasn’t in pain, but as my medical knowledge and awareness has improved with age, I doubt that was the case. And that makes me sad. At a time when she needed us most, we weren’t there.

Unlike with N, the death of K wasn’t so out of the blue. She had been struggling with her mental health badly in the months leading up to her death. I had sat in numerous crisis team meetings with her and had spoken as her advocate, at times when she reached a stage of being utterly catatonic. I knew the ins and outs of previous traumas, I knew how to calm her down and get her to an emotionally safer place. I sat and held her when she cried and screamed and I took implements away that she could harm herself with. I begged her mental health team to hospitalise her because I/we were scared about K’s safety. They stated that until she did something which could put her life at risk, she did not fit the criteria for hospitalisation. When she did something, that something ended her life. But I wasn’t there. Rationally, I know that I’m not psychic, I could not have known her plans and if/when she would carry them out. Irrationally, I feel that I should have just known. I should have had a feeling or inkling.

During a recent conversation I was having with someone, they said that there isn’t a hierarchy for grief and that all feelings and emotions are valid. I agree, to an extent, but I also recognise that however upsetting a death may be, it is not about me. Nor should it be about me.

Today I said “The Last Goodbye” to a wonderful lady, who I admired and loved so much as I was growing up. So many fond memories were shared and amongst the tears, there was laughter, as we remembered her funny, witty, caring, loyal character. I could continue. With her own beautiful voice, she reminded us that no one is alone.

That’s a powerful message. Whether in life or death, I don’t think that we are ever truly alone. People hold their own views on what happens after life and in death, I’m not going to preach my own views because that isn’t the purpose of this post. Shortly after N’s death, I read a fabulous book by Gabrielle Zevin, called Elsewhere, suggesting that after we die, we are reunited with loved ones (and pets!) and live our lives backwards from the day we die. I don’t know if that is true, but it gave me comfort to think that when N died, in just sixteen and a half years, she would be back offering love and joy to more people on Earth, and hopefully have a happier and more fulfilled live. Every single person lives and changes lives, some more, some less. They leave behind families, heartbreak and sorrow. But maybe, just maybe, in time, they will change someone else’s life and so on. A legacy, on one way or another.

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In life after death, you’re never alone either. Grief is a lonely, isolating experience. It doesn’t matter if the person you have lost is 5, 45 or 85. The loss of a person close to you feels a bit like part of you has been ripped out; the severity and healing time depends on the individual. There isn’t a right or wrong way to feel. Your feelings are more than valid.

It is okay to be hurting. It’s also okay to not feeling anything. It’s okay to feel intense anger or endless calm. The sadness will lessen, it won’t ever fully go, I don’t think it should. That sadness is a sign of the love that was had and that will carry on forever. The love, memories and honour of the person will always remain.

Goodbye isn’t forever, but for now, here is my last goodbye to those lost but eternally loved.