Diagnosis Murder Part 1

Well I’ve attempted to write this a few times and failed. In the past I’ve been given labels and written about them. And in reality my diagnosis is still fluid and ongoing.

It’s mostly described as a list of symptoms with a few anecdotes/ short stories thrown in for goo measure. I’ll start all the way back in the beginning… take a deep breath and grab a comfy seat, it’s a long one.

The early days

When I was younger I used to have bouts of severe stomach aches, and vomiting. I remember my first one so clearly. As a birthday treat my mum and dad had taken me to London to see ‘Joseph and His Amazing Technicolour Dreamcoat’. Any 80s child, and closet Jason Donavon fan, will remember the song that was at number one for like forever (sorry if it’s now in your head t… any dream will do…). We were too late to see Jason but starring in it was Philip Schofield of the broom cupboard fame. If you’re too young to get the references then you really missed out. I vaguely remember the show and the t-shirt I got a treasured (until my sister pinched it and vommed all over it whilst travel sick). What really sticks out though is the insane stomach ache I had after the show. We had gone to get pizza and I spent the whole time in the toilet unable to hold anything down.

And so it continued from that point and happened anywhere and everywhere. Always coming on super fast and the most painful thing ever. All the attacks were attributed to an almost ten year grumbling appendix. In reality I think they were Abdominal Migrainesthat were mentioned at the time but not really explored. This was the appearance of my first condition, Chronic Migraine.

Head and occasional abdominal migraines are with me to this day. And no they are not just headaches but they are completely dibilitating and so painful you wonder whether you can cope (if someone gave you a shotgun you’d probably pull the trigger). I have ended up in hospital with mine and take meds daily to stop them. In the last 3 months I have had 5 major attacks each lasting from 7 to 24 hours. Sometimes they cluster and sometimes they don’t. They have a significant affect on my life as are so sudden and viscous. They stop me functioning completely. I’ve tried multiple medications including Propranolol (worked a little bit) and Pizotifen (worked a lot but caused massive weight gain) and my current medication Sodium Valproate ( I have it under review). I also find that sumatriptan is the best medication to use when they start. My latest one has lasted 6 days and although I’ve managed to carry on functioning throughout and stave off the big blow out. It’s been painful I’ve lost my appetite and sleep.

Teens

At 17 I had an enormous attack of stomach pain and migraine. I was supposed to be painting the set of a play and ended up rolling around on the floor cloth in agony, I saw the school nurse and begged to just go home. Looking back I was so used to self managing these attacks that I was convincing to others that I was better than I was. (I still do this now, so if you ever do see me asking for an ambulance, I really need it.) On this occasion the School Nurse must have got me a cab home or something. All I remember was the next couple of days wanting to die from the pain. At some point a GP came out to me and when I wouldn’t let her touch me because of the pain she told me I was being a silly little girl. She gave me pethidine and anti sickness and told me I’d sleep for ages then be ok. I woke up twenty minutes after she left and was back in exactly same pain and vomiting. Eventually I was only bringing up pure black liquid (sorry) and had a circular bruise on my forehead where I’d passed out on a bucket and was still being sick. Eventually another GP came and said it was classic appendicitis. I went off to hospital and had my appendix out.

As a side note, the not being believed by doctors, the self managing of the attacks, misdiagnoses. Plus falling behind at school and teachers thinking I didn’t care has had a huge affect on my mental health and self esteem. In particular feeling as though I had failed and feeling guilt for being ill, or though I was using it as an excuse, is still with me now and it hurts to write it. I remember one of the drama teachers, who was involved in the play I mentioned above, pulling me aside and asking me if I should be doing drama! All because I’d missed the play whilst in hospital and hadn’t finished the floor cloth I was writhing on. Despite getting an ‘a’ in that course, completing a degree, and running a successful theatre company for ten years, I still ask myself the same question and it cuts really deep.

After my appendectomy (still don’t know if it was appendicitis or migraine) at 17 I kept getting flu like symptoms. I had constant fatigue and joint pains. It went on for weeks and weeks, then into months. At the time it was attributed to a glandular fever like virus that my body couldn’t fight off. I dropped back a year in sixth form and began the pattern of doing things at my pace. I couldn’t focus in lessons and would fall asleep on my desk despite fighting it. Interestingly at a similar time my sister was diagnosed with Juvenille Arthritus, and what I didn’t know till later was my mum was diagnosed with Ankylosing Spondylitis. I think this episode was either my autoimmune trigger or the first signs of activity. Multiple blood tests at the time showed positive ANA and white blood cell activity but it was never explored further.

Also from about 15 years old I began to struggle with mental health. At this time it was suggested I had Anxiety and Depression. By the time I went to University at 19 this was really affecting my life and I asked for counselling etc from my GP. By the time I was in my 4th year of university I was having an extremely difficult time personally, with my degree and at home. All of these contributed to a series of severe panic attacks. These were medicated and I just got on with it.

University

Fast forward a couple of years and I wasn’t coping physically at all. Firstly I constantly had the flu and couldn’t function. I worked really hard and just found ways of coping with feeling so ill. I went to the doctors and was told I was ‘unlucky’ to have had flu nearly every month. This was the biggest insult and I just couldn’t cope. I couldn’t get a full time job but built up my self employed work. This meant I was self managing whatever was going on in my body. I could work around the illness by ploughing on with everything I had when in a good patch and hiding when I couldn’t. This managed everything on the surface but in reality I was chasing my own tail constantly. Friends and others constantly commented on how often I was ill, other less kind comments urged me to just suck it up and stop moaning. I remember having conversations with people saying I think I’m going mad but something in my body is really wrong. I still felt like a fraud and the burden of guilt.

In 2005 I began to get severe chest pains. They were so bad I couldn’t use my arms or breathe. The pain was unbearable. My first reaction was that there was something wrong with my heart so I went to my GP. They thought it was either muscular or even anxiety and sent me away with pain killers. But it kept happening in cycles and I could feel the attacks coming. I saw multiple physios who mostly made it worse through their exercises. Eventually I saw a brilliant physio who wrote back to my doctor. She had seen me for a long time and recognised a number of symptoms pointing to something more than a mechanical problem. My trigger points were wide spread and with the other symptoms she thought that maybe it was fibromyalgia. She wrote a long and thorough report for my GP that took into all my symptoms such as fatigue, confusion, dispraxia, flu like symtoms, migraine etc. I returned to my GP who called in a senior partner and they decided together that this was something more. For the very first time I was being listened to and this GP stayed with me through a lot of the next bits.

Adulting

So I finally got referred to a rheumatologist and felt like everything would finally into place. I was finally being listened to and it was recognised that something was wrong. Within seconds of the rheumatologist walking into the room I was crushed. Before even meeting me or talking to me he looked at one set of bloods and announced ‘it’s not lupus, it’s not RA’. Only then did he examine me or ask any questions. But he never really looked or listened. He avoided eye contact with me, choosing instead to stare into his computer screen. I can honestly say I’ve never met a colder or more inhuman person in my life. By the time he abruptly said ‘you can go now’ I was more confused than ever and in tears. I began to walk out as the nurse barked ‘go get your bloods’. ‘What bloods?’ I said as I broke down completely. Then she explained everything the doctor should have done, and that he was a good doctor despite his bedside manner. I don’t think he was a good doctor and triggered lots of mental health issues. Later I got a mystery letter in the post summoning me to a full upper body MRI and physio. Apparently all ordered by the rheumatologist, I didn’t have a clue what was going on. Nor did the physio it seems. I was dumped in a cubicle with a trainee who took one look at me and said ‘I can’t treat you you need someone more senior’. They’d be in contact,  they weren’t.

The next letter I got was summoning me to hydrotherapy. Amazing I thought something practical I could do to help myself. But this was not the case either. The therapists didn’t know why I was there and asked which physio I’d seen, I never had had a proper appointment with any. So they offered me sessions which I tried. The result was cancelling after three seasons as I was in so much pain I couldn’t breathe, move or sleep. My GP wrote a letter of complaint, I was so let down and felt toutured by the treatement both physically and mentally. Again I thought I was going mad, but this time my GP was behind me and persisted. I finally had someone fighting my corner.

So letters of complaint were written and I chose my next rheumatologist at a different hospital. I decided to give it another go and this time couldn’t have been more different. He listened carefully to my history and family history. He said he thought something auto immune like was going on. The first thing he diagnosed me with, however, was Joint Hypermobility Syndrome. This explained a lot of the chest pains I’d been having, as well as other symptoms in most people hypermobility isn’t a problem but with overlapping symptoms it was reeking havoc with my joints, connective tissue and pain. I was finally referred to a specialist physio who confirmed all the previous physio I had received was more damaging than good. I still see her now and she is part of my ‘magic team’ of experts. Without all the sessions I’ve had with her, including ultrasounds and acupuncture, I wouldn’t be able to move half as well as I can today.

To be continued…

Lets rest here for now because I’m tired physically from writing this and mentally from going through it all. I hope this begins to explain to others the extent of what’s going on. But mostly its been a hugely useful process for me to go through it all chronologically and to realise why some of my behaviours and blocks towards the system are there.

Next up in part two, my thirties…

Duvet 

What if I just stay here in bed and didn’t get up? The world would stop turning so fast and I’d stop slipping. I could will it with all my might to slowly grind to a holt. With all the weight of my desire it would turn slowly back, I’d reverse the tide. I’d go through all that pain and terror to get back to the place under the duvet. I turn the covers over to feel the cold and feel alive. I wouldn’t get up eager to make adventures. But I’d stay where you lazed, just lying in bed, no plans, nothing. At least I wouldn’t be alone. Today I’m staying in bed seeking warm and cold. It feels like Sunday, but it’s Saturday. I wish it were Sunday in a different world. 

Bubble

When I started to write a post about mental health the other day I deviated. I was supposed to write about mental health in general and ended up just pouring my heart onto the page. So back to the original post…

I have many wonderful and talented friends who my life crosses with for fun, creatively and also with work. A few years ago a former student of mine introduced me to Katie, as we both had Lupus in common (I guess the disease is good for something). Immediately we got it, the whole chronic illness thing and everything that comes with it. To make it even better she’s a fellow creative soul.

We collaborated a few times in our quest for invisible illness advocacy and creative therapy. Over the past year Katie has been away studying for her screen writing  MA. We’ve missed having her around but the best thing is that she’s been growing her amazing talent. I know it’s not been easy with battling the daily illness thing and the lack of support she’s had. That just makes it more inspirational that she wrote and directed an amazing short film, Bubble.

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In Bubble we meet Erica and Paul, a couple struggling. ‘Erica’s desperate to burst Paul out of his depression, but on the first day he takes medication, she pushes too hard.’ The film is not really about the depression or how it manifests. It is about a couple and how their relationship copes with the the effects of depression.

Katie explains:

‘The representation of Depression in modern media is so often the sad person, who takes medication, and is sad. The human experience of a mental health problem, for both the sufferer and loved ones observing, is much more complex.

When spending long periods of time with a loved one experiencing Depression, I realised I had no idea how to help, or how to act around him when a black mood descended. I realised I was making things worse, but had no guidance on how else to be. It was then that I realised that there are no examples of stories or films that I knew of which exemplified what I should or could do for my loved one who was suffering so clearly but so internally.

Bubble endeavours to be one such example.’

I knew a little about what had inspired her and she told me a little more :

‘Two things really. Firstly I watched other short films and wanted to have a go to see what I could manage. And secondly I struggled to know how I could help friends  with their depression, so wanted to explore that.’

The film is a snapshot into understanding mental health from all angles. It cleverly puts emphasis on the couple rather than the illness. I think this comes from Katie’s innate understanding of invisible illnesses of all kind. After all we all live with, and experience the the illness someone has when we are close and care. We all learn to cope with it and don’t always get everything right. Invisible illness needs to be talked about, accepted and challenged.

Ohh and I almost forget to mention it, Bubble is up for an award. It’s part of the  Nottingham International Microfilm Festival Audience Award. You can watch and vote for it here:

Bed Days Sofa Days

urbanoutfitters.com
urbanoutfitters.com

Bed and sofa days are a serious feature of Spoonie life. So I thought I’d put some things together to help survive them. I was inspired by a Buzzfeed list of all things! I do love a good list and this one was titled: 19 Insanely Cozy Accessories That Will Make You Never Want To Leave Your Bed

So it got me thinking, as a bed expert, what are the top things you recommend for a bed day? So I asked some of my fellow spoonies, here’s what they said:

urbanoutfitters.com
urbanoutfitters.com

Zoe: “Clean PJs, dreadful rom com films (friends call it the heart break hotel collection), colouring in book. Dark days, planning small adventures for the good days! Baking, I find this really therapeutic (not a great combo with steroids!). Crafting, small projects that can be finished easily. Going to a tea shop with good friends and family. Just a small outing to make me feel like I have achieved something with my day, for me that’s important! “

Zoe works in the Arts and is a Myositis fighter. To find out more visit www.myositis.org.uk
Follow Zoe on Instagram

Kim Joonsoo / Via enpundit.com
Kim Joonsoo / Via enpundit.com

Katie: “An extra duvet as a pillow always makes bed days more enjoyable for me. And keeping an array of boxes of cereal by the bed! Cereal helps everything”

Katie is currently studying for her MA in screen writing, works on and off with us a Wide Eyed Theatre, is a talented poet, and makes costumes. All this and she lives with Lupus plus overlaps.

urbanoutfitters.com
urbanoutfitters.com

Helen: “Fave teddy bears. Little book of inspiration / fave quotes. My mini-craft box with ‘easy’ / children’s activities in. Clean snugly blanket. Radio 4 iPlayer tuned to satire”

Helen is a trained Reflexologist and knows all about the art of relaxation and understands chronic pain. This is her page.

forever21.com
forever21.com

Nick: “A onesie, Netflix and a Tardis stress ball usually does the trick. I always try and write as well…. I’ve got a book of writing stimuli and I try and use that to take my mind elsewhere, to varying success. And my cats are very good for those sorts of days – boundless energy that you can’t help but be drawn into!”

Nick is an actor, performer, writer and facilitator. His webpage is here.

modcloth.com
modcloth.com

Pete: “Giant bean bags are really good for sitting yourself up. Midget gems. Aimlessly browsing Instagram. Usually when I’m having a bad day I can’t really breathe much so good music or good films rather than just staring into middle distance is always good… Apparently a strong coffee is good for my lungs which is as much excuse as I need there (just don’t tell my cardiologist!). Oh yeah, forgot to mention cats are excellent company in the small hours

Pete is an ace photographer and his work can be viewed here. Or follow Pete on Instagram.

urbanoutfitters.com
urbanoutfitters.com

Cassy: Endless cat memes. Clean duvet/blanket. Whatever food you fancy. Back to back episodes of American crime dramas. The Buddify meditation app. Browsing on Etsy. Bubble baths. Podcasts. Fluffy socks.

Cassy is a creative blogger and her blog provides an excellent distraction on bed days. You can read her blog here. Or follow Cassy on Instagram. She’s a busy bee and a super fighter of chronic illness.

urbanoutfitters.com
urbanoutfitters.com

And last but not least my spoonie sister Sarie: drawing strange things (when I can), youtube video binging (tutorials and vlogs), A duvet and extra comfy pillows, Clean bed sheets and pyjamas, Cake and tea, Comfort food like beans on toast, Hot water bottles, fresh air if i can get it, Pain killers, doggy hugs, blog writing, friend chatting, listening to woman’s hour or good podcasts, sketchbooking, list writing, cooking good food, heat packs, being surrounded with good objects, not feeling guilty (trying to remind myself of things- again list making is good for this), enjoying small tiny bits and remembering not to compare my self and my achievements/non achievements to others. Remembering that good enough is another persons great. Reading good things (love rainbow rowell & sarra manning books). More pet hugs!

Sarie lives in Barcelona where she is an illustrator and designer. Her webpage is here

urbanoutfitters.com
urbanoutfitters.com

So the top 5 bed day essentials seem to be…

  1. Clean, fresh comfy duvets with lots of snuggling potential
  2. Snacks that are good for you and easily on hand
  3. Distracting your brain whether it be through movies, books or activities or keeping creative with crafts, baking and writing, whatever you can manage.
  4. Treating yourself. If that means a nice cup of tea and some chocolate or a super bubbly bath. Guilt free as you need it
  5. Pets and fellow Spoonies: for hugs, moans, advice and to listen

 

Thanks to all my lovely, talented and courageous friends.

Please leave a comment if you have further suggestions.