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…

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How to make plastic bottle planter | Gardening on a budget

Since my life style change, including being unable to work, and being ‘on benefits’ I have been forced to slow down and re-evaluate spending and consumerism. Yes it’s a challenge, but I have made some delightful discoveries along the way. I’ve always enjoyed gardening and growing my own vegetables and plants. In fact my plant addiction is a little out of control. But I’ve got to the point where I don’t have the money to spend on a lavish garden or a house full of the latest plants. I also want to make the garden work for me and feed me.

Being creative, and little bit crafty, I’ve managed to garden this year on a minuscule budget. Most of this has been by refusing to buy new accessories and tools for the garden such as pots, propagators and netting. Instead I’ve decided to make my own using what most people would class as rubbish. This has tied nicely with my war on waste ( you can read about it here), and has forced me to recycle things from around the house in order to grow my plants.

My first tutorial ( I’m going to attempt a series) is how to make a plastic planter from an old bottle. For those who don’t know this is EarthDay, a day dedicated to making us aware of environmental issues and care for our planet. This year, like we have seen in many parts of the media, the focus is on the war on plastic. So I’ve made for you a guide on how to make recycled bottle planters. The tutorial is for a basic hanging planter but you can make variations to suit your needs.

Instructions for a recycled plastic bottle planter

You will need: A plastic bottle, scissors and string or wool

In addition to this you could also use lollipop sticks as labels, pretty tape to decorate the bottles, a , pokey stick to help make holes, and a craft knife if you prefer cutting this way.

Oh and don’t forget your need some soil and some seeds or seedlings.

Step one Remove any labels, so far these are usually not recyclable, boo! Draw a line around the circumference of the bottle about halfway down. Then draw a tab coming out of the line so this will become your hanger.

Step two Cut around line until you get to the tap and then cut out so it becomes all part of the lower part of the bottle. Then separate the two halves.

Step three With the cap still on the bottle carefully push your scissors or pokey all through the bottle cap to make a hole big enough for the string. Then thread your string through the hole you have just made so half is on the inside of the bottle and half is on the outside. Tie a knot so the string can’t pull all the way through the cap. You will also need to make a hole in the tab if you want to hang your planter by using string.

Step four Put some water into the bottom half of the bottle. Turn the top of the bottle upside down and placed into the base with the cap facing down so the string on the outside dips into the water.

Step five Fill the upturned bottle top with soil and plant your seeds or seedlings.

Step six Thread string through the tab to hang your planter. Alternatively you could staple the tab to a fence or shed. Now the plant pot is finished keep it in a sunny place.

The plant pot is self watering as the string soaks up water the plant needs just like roots would. You just have to keep an eye that there is water in the bottom half of the bottle and top it up as needed.

Variations

  • Add another half cut bottle to the top to make a minute to greenhouse. When you do this the bottles become their own microclimates.
  • As the bottom is flat and so should stand up if you want use the planter on a tabletop or windowsill.
  • I decided to decorate some of mine using Washi Tape to make them more colourful.

These are so simple to make and you can make them with children, as long as you supervise the use of scissors and a sharp knife. I made a ton of these as plastic bottles seem to be in abundance and they’ve worked perfectly for growing peas broad beans and sweet peas. I’m also trying out some ginger root, turmeric root and lemon seeds see if they will grow too.

I’ve made a handy printout sheet that shows this tutorial in brief. Please feel free to use and share it.

So hope you enjoyed this tutorial I’m planning to make some more and my next one will be on other ways to use plastic. And I also will do tutorials to recycle paper and glass, alongside growing vegetables from the leftover scraps. Let me know in the comments how you get on with your planters.

Creating a bedtime routine

When the clock struck midnight on 2017 I decided to not make a New Years resolution. In fact at the time I was probably drinking a glass of bubbly and wishing I was in bed already 😂. I decided that this year I would focus on my physical health, which as you may know, is problematic. Instead of overwhelming myself I decided that each month I would set one focus to work on. For the first two months l’ve done Veganuary, and tracked my water intake.

For March the focus was sleep and here’s what I learned by tracking and focusing on it.

Medication

In 2016 I wasn’t sleeping for more than 3 to 4 hours a night due to pain and mental health. Being that sleep deprived does bad things to your wellbeing and even worse things to a body coping with autoimmune. When I went into crisis I was prescribed quetiapine which was great as it knocked me out and calmed the mind. The pay off was sleeping ten hours, not being able to wake up, and being in a constant fog. I’ve had huge meds changes over the past 3 months and dropped down in dosage on tablets that help sleep. This means I’m sleeping less but naturally so this focus has really helped me focus on natural sleep.

Undisturbed sleep

So one of my worst habits is waking up at 3am and staying awake till 7.30 am. When you then want to be up by 9 this is no good. I often need to wee in the night and have a terrible dry and painful mouth. This combined with pain in my knees and ankles due to Behcets, or bursitis on my hips that creates painsomnia, means I just couldn’t get 8 hours sleep. The meds above helped but without them I am the most restless sleeper.

Waking up

So I always aim for the average 8 hours to get up around at about 8am daily. I’d usually use the iPhone bedtime alarm on the clock app but often I wouldn’t fall asleep in time, or I’d not feel refreshed from sleep when I did. I have restless legs syndrome so would find I couldn’t get off to sleep in time. I also used my Fitbit this month to track my sleep and found that my sleep was so restless. Not really a surprise, as I mentioned above, my sleep is so disturbed. But I also realised I wasn’t helping myself as when I woke up I would be tempted to watch something on the iPad to help me get back to sleep but it was doing the reverse.

So after all this trying to focus on the problems I’ve decided to try a different approach. I wanted to make a change to the way I get ready for bed so that I set myself up for a good nights sleep and feel more in control of the individual elements. So I created a bedtime routine and thought I’d share it with you.

Making your own personalised routine

So the first thing I did was to pick a bedtime. I chose 11pm so I could aim to wake up at 7.30am ish. Then I worked back in half an hour blocks to create a plan.

10.30 pm

As this is the bit right before bed so you want to be winding down. Take these moments for a last minute tidy, but nothing rushed or intense. Turn your bedroom back into a tidy sanctuary. I put my clothes in the laundry bin and make sure everything is hung back in into place. My clothes are sorted Marie Kondo style so it’s great to keep it this way. I also tidy away any beauty products and clutter from the day. It’s here I take my bedtime meds and then hop/ into bed with a podcast playing. Oh and I found the best thing for right before you settle down, a pillow spray by Feather and Down that helps you get off to sleep. It makes me breathe deeply to inhale the incredible scent which helps with relaxing. Set up your beside table to make this easier.

10pm

I chose this time to try to empty my head. I try to keep it simple and uncomplicated. In true bullet journal style spill your mind out onto a piece of paper > check your journal > make a to do list for the next day > fill in any habit trackers and memories/ gratitude journals. Finally I pack my bag with any books or letters and post needed for the next day. Set up a place to keep your things for the morning including a charging station for your phone and battery packs etc.

9.30pm

Stretch and move. I find a last bit of activity before bed helps to firstly make you feel like your body is tired and secondly helps hugely with restless legs later on. I love yoga with Adriene.

9pmScreen free time! Try as much as possible to cut out your screen during your routine. This is the hardest thing for me to do but it is well known that the blue light affects both our health and sleep patterns so I’m trying really hard. To force me off I use the app Moment. This sets bot a daily limit and screen free time. Try to do something enjoyable in place of your phone so you don’t get tempted. Like reading a chapter of that book you’ve not got round to, or grab that colouring book you were given in 2015 and never completed.

8.30pm

Begin the wind down with a little self care. Take your bath now, I like mine scalding hot so I can feel my heartbeat and my skin turns red. Apparently by raising your temperature in the bath it then lowers your body temperature when you get out and makes you sleepy. If you don’t fancy a bath or don’t have time make sure you take your makeup off earlier in the evening so you’re not too tired and give up when you crash into bed later. I’m also trying to get into the habit of getting my clothes out for the morning, the night before so I don’t have to bother in the morning. I use the Cladwell app to help pick outfits.

So that’s my routine. It’s ambitious I know but I’m dipping into it to begin with. I always go for the slowly, slowly habit learning approach. So maybe pick one of the things to do for a week. Feel free to make it your own and find what works for you. I’d love to hear about your bedtime routines in the comments.