An Update. A celebration?

Content warning-

I’m going to be discussing specific treatments and medications. These things are working for me, they may not work for you for a whole bunch of reasons- even if we have the same symptoms or diagnosis. Also, this is a bit of a ramble...

I recognise that I have a great deal of privileges, and that getting this treatment is a direct result of some of those privileges. Sheer dumb luck was also a factor, well you could call it luck or divine intervention or karma or...magic, but a string of circumstances led me to this treatment that it would be unrealistic to expect to replicate. I’m incredibly grateful for the people who enable my treatment, I will never be able to repay them.

A lot of these treatments are herbal, some of it is a little woo-woo, some of it is traditional western medicine. I’m not going to be talking about dosages or brand names, but feel free to ask if you’ld like more info.

This treatment has made a huge difference, but I am cured. I’m still in constant pain, still exhausted and fatigued, still wobbly and wonky. Some things can be cured, some treated, and some simply managed. I highly doubt I will ever be cured, things like the structural abnormalities of my knees and hips will not disappear, but that’s honestly okay for now.

I have the following official diagnosis - Fibromyalgia, PCOS, TMJD, Chondromalacia patellae, Heart Palpitations, Vitamin D deficiency, Hereditary hip malformation and some other stuff that’s not relevant.

It’s suspected that I have these diagnosis, but they’re not willing to say it officially - Hypermobile EDS, PoTS, chronic migraines, thyroid issues and some other stuff that’s not relevant.    

A friend of a friend of a friend’s sister works at Utah Valley Health Clinic, at some point in 2015 I received a mould treatment in the mail from America. My friend had been talking to her friend about the woman’s son, he was particularly ill with Lyme disease and hadn’t been treated very well with traditional medicine so she had taken him to UVHC. The treatment he received there changed his life, and his medical situation was greatly improved. This got my friend wondering what else they could do, she knew most of the ins-and-outs of my health problems and so, with my go-ahead, began to discuss treatment options that could work without me physically being there. The Clinic nurse decided that mould treatment would be the best way to go, something simple that’s often overlooked, could make a big difference and wouldn’t harm me if it wasn’t something I needed.

The course of treatment contained vials and tablets that would treat a generic mould infection. Once I finished the treatment, I was able to stop using my forearm crutches on a daily basis, using them only for big trips or on bad days. This in itself was a massive deal for me, when I was first beginning to get sick I couldn’t even stand without unbearable pain.

We were all amazed at the outcome and we discussed how great it would be if I was able to go there one day. Don’t get me wrong, I was terrified. Scared of the change, scared of getting my hopes up, scared of disappointing people...I’m still scared to be honest.

This Autumn I made a trip to Utah, not specifically to go to UVHC, but it was part of the plan. The aforementioned friend gave up her appointment, one she’d waited for months to get, so that I could see the nurse. A few days before the appointment I had an emergency root canal, which I won’t go into detail about as all you need to know is that the anaesthetic didn’t work and the placement and shape of my jaw was a big problem. It was one of the most traumatic and painful experiences of my life.

I had never used anaesthetic before, but I knew that anaesthetic failure is common with EDS, so I did warn the dentist. He was lovely, he constantly apologised for the 4 plus hours I was in his chair. I watched Moana and The Theory of Everything - that’s not relevant.

UVHC is a small clinic in Utah Valley, USA in a picturesque red brick building across from a restaurant that makes really good sandwiches. There are signs on the door and inside asking clients to not wear strong perfumes or bring heavy chemical scents into the clinic. Inside there are wooden children’s toys, magazines and glass display cabinets full of herbal remedies and this season’s cold remedy. I didn’t buy a cold remedy, I got a cold within days of being home. The clinic were happy to let my friend pay for my treatment, I was less happy about this but, experience told me that arguing wouldn’t get me anywhere and, besides, I couldn’t afford it on my own. I don’t remember the exact costs, but my monthly treatments are currently around $500 and the clinic will accept some insurances.

There’s a similar clinic in Belgium that the Dr at UVHC works with, I can give you the details if you’ld like to contact them.

After filling out a thousand pieces of paperwork, and ticking off practically every symptom box they had, I met with the Practitioner and invited my friend into the room as well. On the paperwork I had only given information about my official diagnosis, nothing about EDS or anything like that. Brace yourself for the woo-woo up ahead. I have no information about the science behind this so I’ll just tell you that the testing consisted of my holding a copper pipe in one hand a small metal rod being poked and prodded along my hands and feet in line with a series of questions. A computer showed some charts and the Practitioner interpreted the lines into treatments I needed. After we talked for a little while about my life, the Dr came to sit with us. Now, the Dr is a traditionally trained and certified prescribing Dr, but the practitioner isn’t traditionally certified and cannot prescribe or diagnose. They do not diagnose anything, they can say that you need the treatment for XYZ, but not that you have XYZ.

The Doctor found me fascinating, as did the Practitioner, being British in America is endlessly entertaining. They also found my whole medical story fascinating, the lack of help and treatment appalling, and the medications I had been taking at a young age shocking. Prior to this appointment I had taken myself off all of my prescribed medication, carefully and slowly, as I was tired of side effects and little profits, but I was taking antibiotics for the root canal infection and had been prescribed strong painkillers.

(Do Not Do This Without Seeking Professional Advice)

During the conversation, I mentioned the anaesthetic failure, my frequent subluxations and other symptoms. I did not mention EDS. The Dr told me he had recently been studying a new condition, that he thought I might have, but he was unable to say the name properly. Something like El-Hairs. He was surprised that I could not only pronounce Elhers-Danlos, but that I knew so much about it. Again, he could not diagnose me, but we agreed that we would include the EDS treatments he had been studying. He was heartbroken that I lived a life so full of pain for so long that I was completely desensitised to pain.

Over the next few appointments and treatments at the clinic, I spoke more with the Dr and built a great relationship with all of the staff, and several visitors at the UVHC. The first question on the pre-appointment paperwork is ‘What would you like from this appointment?’, my answer was ‘Not to be dismissed. To be respected and for my problems to be recognised. Lower daily pain.’ That’s all I wanted. All I dared myself to hope for. Less pain and less ignorance. Both of those goals were achieved.

Some of these treatments are short time, some a one off and some long term. Forgive me for not knowing the exact purpose for all of them, there’s a lot! I can give brand names and more info you get in touch. I’m terrible at taking medications at the correct times, I always have been, so these treatments haven’t been able to do their job optimally and that’s on me. I’m working on it.

-High-dose Vitamin C. This is something that’s being suggested and trialled for EDS across the world recently. There is an injection version, which can’t be diluted much and burns like you imagine citric acid into your body feels like because that’s what you’re doing. The IV version is diluted and mixed with other helpful vitamins and is only an uncomfortable pain. The current thinking is that it will take years of treatment to have any significant difference in cartilage, but that other symptoms such as fatigue and scarring will react sooner. I have noticed a difference in the amount of scarring I get from tiny scrapes, wounds healing faster and generally more energy. I also take a daily high-dose liquid Vitamin C supplement.

-Another round of mould treatment. The suspicion is that this is from a childhood spent in chicken sheds and a little while living in dampy old flats. These are vials taken orally every three days until finished and large capsules taken several times a day.

-Lyme treatment. When investigating my health before the fibro diagnosis I was tested for Lyme and told I didn’t meet all of the criteria. This is very common, even some Lyme is enough to make you ill. Meeting 80% of the criteria, still means you have Lyme to a degree. These are vials taken every three days, through several courses until finished, herbal drops and a series of tablets. There may be more treatment in the future.

-Estrofactors. PCOS has meant that I’ve been unable to conceive, my doctors have never offered me treatment of any kind. I was told it would require intense medical intervention and probably not succeed. I’ve never been offered help for the symptoms either. These are large herbal tablets, taken several times a day. Since taking these I have had more regular periods of less severity and milder cramps. I haven’t noticed any difference in other symptoms.

-Protein digest. The gluten, wheat and dairy intolerance diagnosis I was given as a child has never fitted. Soy milk and wheat free bread has never made a big difference, nor did Lactase enzymes. Apparently I am not intolerant to these things, I can’t digest protein. When taking these tablets before meals, I do not experience severe cramps or diarrhea. I can immediately tell if I miss a dose as any food causes awful trapped wind in my shoulders and ribs.

-Magnelevures. A Magnesium supplement that tastes absolutely vial. Designed to aid magnesium absorption which is good for nerve and muscle pains. I honestly struggle to take this one the most.

-Probiotic. Only for use while I was taking antibiotics for the infection in my root canal.

-A water supplement designed to relieve headaches by optimising the hydration of the small amount of water I drink a day. I find it incredibly difficult to drink more than 500ml a day, on average I drink around 300ml. When I really put my mind to it, usually when I feel pressured by other people noticing I don’t drink, I can drink around 1L. I’m constantly dehydrated, which definitely contributes to my migraines.

-Vitamin D topical ointment. This stuff. Wow. After 1 day the psoriasis on my foot, which was horrendous after the dry Utah climate, was smooth and unbroken. When used daily, the ointment keeps the patches soft, not bleeding or weeping, less scaley and much less itchy. If I miss a day, it’s very quickly back to dry and cracked. I’m also Vit D deficient so, it can’t hurt to have more anyway.

-Iodine drops. For the undiagnosed thyroid issues that almost every doctor I’ve seen has suggested and done nothing about.

-Oxytocin. Not to be confused with Oxycontin, the high strength opioid. Oxytocin is a somewhat traditional treatment for neurological pain. I had root canal surgery the day before, I was in Pain with a capital P. The Dr gave me a high strength injection of Oxytocin and I didn’t need to take any painkillers for 5 days. I now have a nasal spray that I can use at my own discretion under his directions. It doesn’t get rid of all my pain, there’s still a constant pain but the peaks are gone. If they do flare, the spray works quickly and wonderfully to dull them down to a more bearable level. I love this stuff.

-A Detox foot bath. Claimed to pull impurities out of the soles of my feet, if nothing else it was cool to see the water turn all kinds of gross colours.

-Grounding. I was advised to spend more time outside, barefoot. Unfortunately I live in England and it’s way too cold to spend the recommended 9 hours outside, especially barefoot. I have made more of an effort to be outside and away from screens.

I have sheets and sheets of test results if you’re interested in that sort thing, detailing exactly which mould strains I have and research on the use of Oxytocin.

The takeaway is that I felt comfortable enough to get rid of my mobility aids, I’m having much fewer debilitating migraines, my general energy levels are higher and my general pain levels lower. I don’t know how long this will last for, but for right now I’m embracing it.

A rock and a harder rock

Let me start by saying that I understand that I'm incredibly privileged to even be able to consider this, but I also want to make it clear that it's not an easy thing to do either. 

I'm coming off my pain medication, the big neurological ones that are supposed to keep me ticking over. That is beyond scary, but I feel like I have no real choice here, my options are limited and right now this is the best one. The medication is a popular one for Fibromyalgia in the UK, it's also supposed to help with the pain from some of my other conditions, but comes with a stack of long term interactions, scary side effects and general bad news - for some people that's the best option they have, that's fine for them too. However, for me, it's something I just don't want anymore because I've been on and off this med for around 5 years now and I'm still waiting for it to really work...it takes my daily base pain down to a bearable level though it by no means makes me pain free.

There was a study recently published about how this drug can hinder the creation of brain synapses, for most people that's not a huge deal because the brain doesn't create many as an adult in normal circumstances. Except that I was 19, so my brain was still happily making new connections and should have been continuing to do so for a few years, when I was first prescribed ever increasing doses of this medication, who knows what damage was done? I'm haunted now with thoughts of what I could have been, it's possible that it wouldn't change anything if I hadn't taken it but I'll probably never know.

I don't want to bore you with a long list of reasons that I'm making this choice, what I wanted to focus on was the empowering part of this choice. This is my choice, my pain levels will go up, I'll have to rely on other pain relief methods and there will be some other things to deal with along the way but the benefits outweigh the negatives right now and I am making this decision for myself. Oh, and I also want to ask you all to just bear with me while I get used to this change. 

Can you imagine having to decide between two poor options? One path will mean you can live a little more of a normal life for a while but it is damaging your body, whereas the other means you have to sit out on life a little more but damage your body less. Both will affect your quality of life negatively: one gives you crippling migraines that last for days with little rest in between, the other will make your daily pain 5-6/10. Both will affect your quality of life positively: the left path allows you to be a little more active, the right let's you have a clearer/less drowsy mind. It's like choosing between your heart and your head, you win and lose no matter which way you go. Many, many people will give me their opinions, not all of them supportive, but at the end of the day when I'm in curled up in bed with a snoring puppy and the heating clicks on I need to be able to think of my decision with some vague feeling of content...and they won't be there for that. That's on me, as it will be when the med is fully out of my system and the inevitable flare kicks up. Will I still think I made the right decision then? Who knows, but for right now I am satisfied.

- Because somebody will ask - No, the other medications recommended are not an option for me unless you know some secret ones that I don't. I didn't make this decision without doing my research first, I've also spent the past 6 years trying all sorts of medication cocktails. 
- Also, I'm not off all my meds, just this one and I have done the proper withdrawing procedure. Do not change your medication without consulting your Dr first.

When your bed makes you seasick

Let's start off by explaining that Vertigo does not mean 'afraid of heights' the word for that is actually Acrophobia. Vertigo is actually the name of that swaying and dizzying sensation you get when you look down from high up, hence the confusion, except that for some people that sensation can come from any movement. In fact, it sometimes even comes from laying still. 
That's my reality today, my bed has become a boat on choppy waters and don't even get me started on trying to walk. So there were a few options open to me today: I could attempt to battle on regardless and undoubtedly end up fainting on all over the place complete with bruises covering my skin;  I could lay in bed pitying myself as I let the situation get the better of me or I could do what I did - Make myself a comfy little nest in small bouts of energy, find a few jobs I could do on my laptop, put on several episodes of Poldark, and find the joy. 
It's been a busy weekend with a lot of brain-work so having a day to rest and potter online was refreshing, it gave my brain a little rest! I could cross of a few things from my to-do list such as e-mails to reply to, bills to pay online, and graphics work which gave me a wonderful sense of achievement and purpose. I could catch up on TV programmes and films, write blog posts, and research video ideas that would otherwise take me away from the other household jobs I 'should' be doing without any of that guilt. 
So my message today is to try and embrace joy in any and every situation! It isn't always easy, I know that, and we absolutely shouldn't ignore the bad times because it's healthy to address those too but we can't dwell in the negative. We need to actively look for the happiness, and I promise that if you do you will see a difference.

Invisible illness awareness week tag

It's INVISIBLE ILLNESS AWARENESS WEEK! And because my Invisible Illnesses happen to be keeping me awake, I decided to do my 30 Things tag! If you have an invisible illness or five, I TAG YOU!
I stole this from the wonder Shay Batte.

30 Things About My Invisible Illness You May Not Know – 30 Things Meme

1. The illness I live with is:
Fibromyalgia syndrome, chrondomalacia patellae, polycystic ovarian syndrome, panic anxiety disorder, generalised anxiety disorder, depression, tempromandibular joint disorder, a genetic hip socket malformation that I can't name, hypermobility syndrome (under investigation as to whether this is EDS or just HMS),  multiple food, medication and other allergies, 'sticky' blood, undiagnosed heart palpitations...I THINK that's all...

2. I was diagnosed with it in the year:
Several different years of course, mostly beginning in 2010 though some from birth.

3. But I had symptoms since:
Looking back it seems my symptoms of fibromyalgia have been around since I was a young child, however I was 18 when they ramped up enough for an investigation. That was the worst period of time in my life.

4. The biggest adjustment I’ve had to make is:
Adjusting my goals and dreams. I don't think I'm quite there yet but I'm trying.

5. Most people assume:
That I'm faking or exaggerating, because I come across as bubbly and smiley. I've become a good actress.

6. The hardest part about mornings are:
Lethargy, fatigue, muscle and joint pain, headaches and the feeling that I didn't sleep at all (I probably slept very little)

7. My favorite medical TV show is:
 I like House, I quite liked The Red Band Society but I don't watch any others at all.

8. A gadget I couldn’t live without is:
My phone, having a connection to the outside world and a means to call for help is vital.

9. The hardest part about nights are:
Pain and insomnia (painsomnia), nightmares when I do sleep.

10. Each day I take:
Medication to keep my pain at a bearable level, it doesn't always work. Extra pain meds of varying strengths. Meds to keep anxiety at bay, which doesn't always work. Meds to counteract the side affects of the other meds.
- A deep breath and thank Him that I have another day here.

11. Regarding alternative treatments I:
Am sceptical. I've tried a fair few and only had bad experiences. Unless you have a truck load of medical experience, specialist knowledge and infallible research don't peddle your wares here. I'm currently out of medication options, what I'm on now is ruining my body but I have no choice.

12. If I had to choose between an invisible illness or visible I would choose:
I want to say visible because being invisible is so hard. But then I think, and feel grateful that some days I can pass for 'normal' whatever that is.

13. Regarding working and career:
 I would love to, I love the career I studied for but I can't do the hours the employers want. I had to realise that my career goal would likely end up crippling me physically, mentally and financially so I still haven't really adjusted to that.

14. People would be surprised to know:
98% of my friends are online and are sick too, because able-bodied friends don't seem to stick around much. (this is Shay's answer...I don't need to change it)

15. The hardest thing to accept about my new reality has been:
I lost a lot of what I thought defined me, finding a new identity was and still is hard. I'm not good at accepting my limitations, not being what I think I should be is incredibly hard to manage.

16. Something I never thought I could do with my illness that I did was:
At a few points I thought just living wasn't a possibility, now I strive to thrive instead of survive.

17. The commercials about my illness:
Don't exist.

18. Something I really miss doing since I was diagnosed is:
Being spontaneous, living IN the moment and not contemplating every moment.

19. It was really hard to have to give up:
My self imposed expectations of what my life would be. To be honest I don't remember life before...I miss denim I think.

20. A new hobby I have taken up since my diagnosis is:
Blogging, book tube, embroidery, colouring...anything I can do whilst at rest really.

21. If I could have one day of feeling normal again I would:
This is my normal, waking up in pain is normal to me. I don't remember not feeling that way.
If I could wake up free of all symptoms? I would run, I would cry, I would go to the beach, I would eat so much cheesy pasta and garlic bread, I would probably actually just lay silently crying.

22. My illness has taught me:
That it's okay to not be perfect (which I'm working in accepting)

23. Want to know a secret? One thing people say that gets under my skin is:
'You just need...'
NO

24. But I love it when people:
Take me into account when planning or being around me in a sensitive way. I love, love, love how kids are when they ask questions and make comments.

25. My favorite motto, scripture, quote that gets me through tough times is:
'Wherefore, be not weary in well-doing, for ye are laying the foundation of a great work. And out of small things proceedeth that which is great.' D&C 64:33 (fun fact, this was my favourite saying for years before I even knew what D&Cs were)

26. When someone is diagnosed I’d like to tell them:
I believe you.

27. Something that has surprised me about living with an illness is:
The community, I felt so alone until I found the utterly amazing community of sick people around me.

28. The nicest thing someone did for me when I wasn’t feeling well was:
Stayed with me, six years and counting, after I begged them to leave and find someone better.

29. I’m involved with Invisible Illness Week because:
If we don't shout about it, who will?

30. The fact that you read this list makes me feel:
Like there may be hope.

It's not all doom and gloom y'know.

I think I've given you all the impression that being sick is 90% doom, gloom and staying in one room so I thought that now was the time to set the record straight.
I'm naturally a glass half empty kind of gal, but I really do try to see the glass as at least trying to be half full. With chronic illness it really is all about how you look at it, I'm sure you've all had a few of those moments where you can either laugh or cry, well being chronically sick and fairly young it's basically like that all the time. Trust me there are plenty of times when your options are really cry or really really cry, but isn't that just life, wether you're sick or not?
To get back to the laughing part then I'd like to introduce to what I think is one of the funny symptoms of my crazy body...hiccups. I don't mean regular, garden variety, have a glass of water hiccups. I mean diaphragm spasms of a colossal scale for days on end. Seriously, days. I work with kids who find this hilarious and with adults who find it infuriating, when exactly do hiccups stop being funny? (apparently it's not 22) When these ickilycups, as my grandad calls them, first begin I do the grown up thing and keep my mouth closed to avoid sounding like a bull frog at the back of the room however, these are sneaky hiccups. They'll stop for a little while, just long enough for you to think that they've gone and its safe to open your mouth then, BAM. Bullfrog. Another funny thing about them is that they make my whole torso move, forget trying to eat or drink, the real challenge is in not looking like I need an exorcism every 5 seconds or so.
Next up is a word I'm slowly coming to turns with in regards to myself...clumsy. The thing with clumsy is that I could have been diagnosed and therefore helped a lot earlier if I haven't been written off as clumsy since birth. Buy, wether I like it or not, I am hilariously clumsy. I literally can't walk past a door handle without smacking into it, I even use plastic dinnerware and my cups have lids and straws though I still manage to spill them. I could cry that I use a sippy cup (not literally, that's just what I call them...although they would be useful) at 22 and try to disguise them in an adult way or I could use them with pride and only purchase children's versions featuring various film and cartoon characters. Which would you do?
 Meals out ate just a disaster zone, my first date with my husband started with me spilling pop down my top on the bus there and then pasta sauce on my jeans, only to finish when chocolate sauce drips down my top (I hated that top anyway) thank god he found it funny too!
At the minute I'm trying to teach my beautiful puppy DPT or deep pressure therapy. If you've ever seen an assistance dog lay on their owner this is probably what they're doing, it's a way of providing pain relief through warmth and pressure, think about when your muscles ache after five a side and you rub heat gel into it. She does it of her own free will and has done since I got her but she doesn't always do it when asked, resulting in some pretty funny situations. Her favourite at the minute is to sit on my face...not helpful, especially in public. Another favourite is to become a parrot and sit on my shoulders, which in most dogs is an act of dominance but is an act of randomness for my pooch. I could get annoyed and frustrated that she doesn't do what she's told all the time and embarrasses me in public, or I could just laugh and give her a cuddle anyway. It's not a hard choice.
I know all this positive thinking malarkey sounds a bit daft but honestly, give it a go. Just make a list of everything in life that's pretty good right now, even little things! I'll do a few to start you off:
- icklycups
-random clumsiness
-bizarre dpt training
-bath bomb glitter getting everywhere
-jazzed up living aids
- sick kid perks of free lip gloss etc.
-nothing shuts down a-holes like the disabled card
-ableism bingo
-the cost of living aids is hilarious
-getting to sit pretty much wherever you want
-sick kid community
-colouring books
......

Yes you have a degree, you're not a genius.

It's reached that point of my life now where my peers are graduating with fancy degrees and becoming fully paid members of professional societies, whilst I am happy for them I am not happy at all about the recurring theme lately of "poor little Leanne."
Alas, dear reader, I have never studied in those hallowed halls nor have I racked up a substantial debt which directly correlates to my blood alcohol level. I gained early acceptance at two different universities and was all ready to take my place amongst the fresher throng when tragedy struck and my life was tipped upside down.
I was too busy battling for a diagnosis and learning not to walk like a dinosaur to think about going to lectures or writing essays. I didn't even finish my first two attempts at college life and while I am far from a genius, actually not that far according to my mensa testing as a child, I am certainly not stupid.
Yet these freshly graduated morons seem to think I am, they have conveniently forgotten how many times I have beaten them at scrabble or helped them cram revision in at 2am, in order to treat me like a simpleton.
Unless I have forgotten everything I knew in the four years they have been at University then there really is no need to explain their language, describe what their degree is in or generally talk to me like a toddler. In fact, I have worked with toddlers and I wouldn't have spoken to them the way I am spoken to.
So here is a message to everyone, degree or none. We're not idiots, we know things you could never imagine, we experience more hardship in a day than most people will in a lifetime, we may never have letters after our names but we are bright, strong and valuable. We neither want nor need your pitying words, it is a shame that some of us didn't get to follow our plans but that is our issue to accept, not yours to pity.
I'm not a fool, don't treat me like one.

Could you smile through this?

Okay so here's how I know that my physical health has a direct and significant impact on my mental wellbeing. I'm often told that being ill is no excuse for being miserable and 75% of the time I agree, I know some bubbly people who face terrible physical adversity, but when the world hurts you how can you be happy?
Today the world is painful for me.
Lights are too bright, even with sunglasses on an overcast British day I'm squinting.
Every sound feels like its boring into my skull, the sounds most people don't even here are crushing me, I can hear the buzz of the lights like a banshee is screaming in my ear.
My own skin feels like sandpaper, the softest clothing I own is burning my skin, tearing chunks out of my flesh with barbed wire.
My three layers are no defense against the mild weather currently freezing my extremities and turning my joints into iced over pits of hell that click, burn and throb no matter what position they are in.
The vibration of the bus, while usually a slight annoyance, is coursing like lightning through me, ripping my nerves to shreds.
That's without all of the muscle twitches, pin and needles, headaches, jaw pain, knee pain, swollen joints, fatigue, brain fog and the general feeling of destruction in my day to day life. With all of this going through my body how am I suppose to feel happy? Or grateful? Or even anything other than a deep desire to crawl into a warm, dark place, curl up in to a ball, or as much of a ball as my unflexible joints and muscles will allow, and die.
could you?

Mental health wording survey Pt 1

Over the past couple of weeks I have published a survey about the wording the general population use regarding mental health problems and the responses were surprising from the beginning. I'm not a data analyst or a specialist in any way at all, but I'm going to attempt to analyse the results to try better understand just what is acceptable, anger inducing or upsetting to the mental health community. I'm going to do this in installments so it's not such a daunting read so bear with me and I'll be as quick as I can, for those of you who stuck around for the AtoZ I promise to not take months this time!

 We are constantly told that it's 'time to talk' but as a nation we are terrified to do so, I am not ashamed of my problems but I often feel that other people are ashamed for me. Words are whispered around us in case we spontaneously combust if we hear the word depression or schizophrenia, heaven forbid someone actually says the words mental illness.

The first thing I noticed, and something I found quite interesting, was that nearly all of the respondents were female. 86.4% in fact, with only 4.5% being male and 9.1% identified as other ( agender, trans etc.) This may be because of the outlets I used to promote the survey or it may even be that men just don't like surveys, however I feel that this is due to men generally being more uncomfortable with these sort of 'emotional' issues, for example if I see a male doctor about depression they are usually very fidgety and desperate to get me out of the room whereas the female doctors are much more open to talking about it, most men just don't seem to do feelings and I wonder if this is a cultural thing that men aren't 'soft' about emotions or if this is actually a biological factor. Back in the day men would hunt and gather and provide for the family, probably spending most of their time away from the home whereas women were literally bred to look after the home, the children and the elderly. Perhaps evolution has desensitised men to emotions.

I also asked those who felt comfortable to tell me their age, sexuality, ethnicity and job as I expected there to be a large trend in the results especially with age. However, I can find absolutely no trend whatsoever in any of them, I'm sure someone much more qualified than me would be able to, but to my untrained eye there is no significant difference at all. I thought that the older generation, older than mine that is as I am Generation Y, might be a little more free with language my generation wouldn't think of using. I always think of us as more accepting and liberal in general but I suppose I underestimated older people, sorry. 

Invisible costs.

Bring chronically ill means you have to do some things a little differently but, not always in an obvious way and that tends to really throw people off.
I get a taxi to the next village over every morning to catch my train to work, it's about a 5/6 minute drive and most people walk it but, that's simply not an option for me. I have tried it once, it took me over an hour and I was in agony for days. Although my friends and family know I can't walk long distances they still suggest I walk it, someone mentioned cycling once, whenever I complain that my taxi was late or too expensive. All a lot of them see is the wasted money because that's £5 a day I could save by walking. What they don't realise is that I would pay five, ten times that if it meant I could work at a job I love and feel like a 'normal' functioning member of society.
Other little costs are things like trousers. I can't wear denim or scratchy, non-stretchy fabric like it so buying trousers that don't look like they were designed for a grandma can be a real pain and usually I have to travel to certain stores and pay extra for cotton jeans. My coat is a ski jacket which cost me a fortune, not because I love skiing, but because its very insulated and getting cold is painful.
All of these little costs add up to making a spoonie life so much more expensive without even taking into consideration the big costs like travel to hospital visits (£300 to the specialist on the train).
When people whinge about chronic illness sufferers claiming benefits like PIP or DLA because they say we don't have any extra costs like 'real' disabled people then I wonder if they have ever considered all of the little invisible costs adding up and taking their toll on our income.

Being 22.

I feel like Taylor Swift lied to me about how it feels to be 22...https://www.youtube.com/watch?v=6v9nfy_ZmsA

It was brought to my attention recently that I'm no longer really a young person with chronic illness, but neither am I a 'regular' person with chronic illness. Being 22 I don't know where I quite stand at the minute, of course in medical terms I'm still an exception for my problems and in society's views I'm still too young to be ill, but in the chronic illness world, where do I stand?

The community really is split into young people and everyone else because honestly viewpoints and situations are very different in each clique. What's important you at 15 probably isn't at 45. 
I certainly don't think I'm part of the older group just yet as my pension pot never crosses my mind. Then again neither do I worry about my GCSE's, so where do I belong?

We were the young ones not very long ago and it isn't that I feel particularly excluded from the clique it's just a rather bizarre position to be in. I suppose that whether ill or not being this age is difficult for everyone, when did we suddenly become part of the big, bad, adult world? I don't remember that happening.

No longer is it acceptable for us to disappear from the world whenever we feel like it, we have to be scary sounding words like 'responsible', 'dependable' and 'reliable', which I am not entirely happy about. Saying that though, I don't think I'd really want to go back to being 15 and stressing about who fancies you and what grade you got in the maths mock exam. 

I guess there is no right answer here, we belong wherever we feel the most comfortable. 'Where is that?' I hear you ask, well I'm married, sitting in a children's cartoon character onesie watching teenage american TV shows. You decide...

Inspo Porn Star (Apparently)

Please bare with me for I am currently an emotional wreck. You see, dear readers, I have just received my very first negative comment. Apparently I am a horrible example of a chronically ill person as I am spreading Inspo Porn and thus validating it. 

I bet I've lost some of you already so I'll back up and explain a little; Inspo Porn has become the name of those patronising phrases able-bodied people like to use to feel like they're being empathetic. Here's a few for future reference: 'overcome so much', 'inspirational', 'brave' and 'uplifting'. Now obviously it depends on the context, if a disabled person does something that genuinely they are good at then go ahead and compliment them as much as you like but if you're calling them 'so very inspiring' just because they brushed their hair it's a little bit cringe-worthy. I am good at my job, thank you very much, so feel free to compliment that and yes you can acknowledge that it is quite a feat for me to be working at all, but please don't tell me that 'if you can do it, anyone can' because I'm not a china doll, I'm a human being just like everyone else who just has to do things a little differently. 

Personally I really don't get offended by this stuff, I get that people are trying to be nice and it is kind of nice to have someone tell you that you're inspiring. However, I understand that for some people the whole thing is completely unacceptable and while I appreciate their opinions I will not be retracting anything I have written or changing my view on this.

This all came about, I believe, from a post I wrote about those news stories where a 4 year old paraplegic, deaf child climbed 6 mountains in two days with a goat on their back while raising £4million (Find it here http://wellyoulookfinetome.blogspot.co.uk/2014/04/guilted-into-action.html) And perhaps a couple of others so I just want to make sure that I say this nice and clearly: 

I never intended for any of these to be Inspo Porn, they are merely meant to be slightly motivational to those who are able bodied, disabled and everywhere in between whilst being a commentary of what's going on in my head.

To conclude this little rant, a rant-ette?, I want to tell you all that each and every one of you ARE inspiring, ARE brave and ARE amazing simply for being you.

Z is for Zeal

Zeal - noun Great energy or enthusiasm in pursuit of a cause or an objective. 

I really wanted to make sure this project, which I apologise for taking way too long, ended in an inspirational way. It was very hard to find a 'Z'word that fitted what I wanted to say but I think Zeal will do. 

With a chronic illness it can be really hard to work up any kind of enthusiasm because there are those thought in the back of your mind that tell you that you might not get to do it at that time, you might have to compromise or never get to do it at all. But, by doing that your almost letting the illness win. What kind of life can you lead if you never get excited?

Get enthused about just being here. Be excited about the little things. This week I'm flaring so my goals have shrunk a little, but I'm so zealous about finally finishing this project that I'm smiling at 1am through the pain. Tomorrow I'm gunna have a really awesome bath, with bubbles, salts, a hot drink and a good book so that's my next objective and guess what? I'm looking forward to it. 

That's all I'm saying to you. You're probably not going to be looking forward to scaling a mountain next week and that is perfectly fine. Instead, lets get excited about the little things. 

Leave me a little comment or use #chronicallyzealous to let me know what you get excited about, remember it's totally acceptable to look get zealous about putting on fresh PJ's. 

Y is for Youth

Youth - noun The period between childhood and adult age. The qualities of vigour, freshness or immaturity as associated with being young.

Every time someone tell's me I'm too young have Fibromyalgia, the average sufferers being middle aged women, I'm reminded of Phineas and Ferb.

Basically, Phineas and Ferb are cartoon step-brothers who spend their summer holidays doing one crazy thing everyday, while there sister tries to get them 'busted' (The boys never actually break any rules or disobey their parents...seriously just watch it). Quite often adults will ask them "Aren't you a little young to...?" To which Phineas always simply replies "Yes, yes I am." Then the adult will carry on with whatever they were doing, they never argue with them or tell them to do something else, they simply accept that yes, they are young but it's still going to happen.

What a beautiful world that would be.

Like the boys, we can't change who we are just because we don't fit into society's pre-existing views of what a sick person should be and what a young person should be.

As much as it's awful and as much as it doesn't fit on a chart there are a lot of young people out there with chronic illnesses. We're missing out on a lot of what being young is supposed to be: we have to grow up quickly; learn to be responsible for ourselves; miss out on a lot of the typical activities and people tend to forget that inside we are still that person struggling with the transition of no longer being a kid but not quite being an adult. We may act older or more mature than our 'regular' peers but that's because we've had to learn to be, not because we chose to be different. I'm certainly not saying I want to go clubbing every night but the fact that it isn't an option is really well...suckish.

In effect our youth has been stolen by our health. 

I'm not saying there's anything you can do about it so don't feel bad. I'm just saying please don't forget that under the bravery mask, behind the medication timer and beneath the symptom tracker is a young person who might appreciate mindless gossip about RPatts like just like a 'regular' teenager.

X is for Xenodochial

Xenodochial - adjective Something or someone that is friendly to strangers.

Just going to say that I am very pleased with myself for persevering until I found an awesome 'X' word and not settling on X-Ray vision.

As a community Spoonies tend to be pretty welcoming, accepting and xenodochial, possibly because it's not something we experience all that often ourselves. Strangers often give spoonies a rather wide berth, maybe they're scared they can catch whatever makes us 'weird' or because they don't want to be associated with someone so 'lazy', perhaps they are just scared of what they don't understand. Whatever their reasoning, it can be rough on chronically ill people to have the public avoid them so actively. 

Within our little world though pretty much everyone is accepted, no matter what you've got going on, where you are or even what you call yourself. In one of the online communities I'm happy to be a part of every new member does a little introduction that tells us who they are, what their illness or problems are, and what they like to do with their time and sometimes these can be a little outside of the box but nobody ever says anything other than 'welcome!' before immediately involving them in conversations about shared interests. 

What I'm trying to say here is that if people who have so much bad  in their lives can be kind and welcoming then what's stopping 'regular' people? Being welcomed despite our differences is one of those feelings that doesn't disappear; it's a feeling that we subconsciously pass forward and it's wonderful.

 So where ever you are, whoever you are and whatever you're doing, I challenge you to open your arms (metaphorically, hugs can hurt) and welcome the world.

The 'community' I'm referring to is mostly online on various social media sites and email, but also through snail-mail and support groups. There are many sites/places for all sorts of key demographics but the one I mention here is The Pillow Fighters Club on Facebook. I don't have any vested interest in the site, I just find it very fun and useful, I also write for the The Pillow Fort magazine. http://thepillowfort.co.uk/

W is for Wish

Wish - verb Feel or express a strong desire for something that cannot or probably will not happen.

I bet most 'regular' people would say that the first thing someone with a chronic illness or disability would wish for is to be normal and healthy.

 I bet that they are wrong. 

Sure, when things are tough, in times of frustration and anger we probably say that we wish our lives were different but we don't really mean it. Although our problems don't define us they do make up who we are, without them we wouldn't have the same perceptions, ideas or attitudes so wishing them away just isn't something we'd do. 

Of course I'm generalising a little bit and I'm sorry if you think that I'm being crazy but out of my spoonie friends I don't think more than 10% of them would genuinely wish away their problems. 
I've had this conversation with a friend of mine who has recently had some health issues that although chronic are pretty treatable and when I said I wouldn't give up my problems she was definitely shocked. It's not like I wouldn't give up the pain, that's what medication is for, because I seriously would. But if I had to chose between the pain and the fog, I'd chose the pain in a heartbeat. 

Since getting 'sick' my life has literally turned upside down and I now face issues that I'd never even considered before but I wouldn't change it, not really. Without them I wouldn't be where I am now, maybe I wouldn't think the same and I definitely wouldn't have a lot of the friends I do now. 

V is for Verification

Verification - noun The process of establishing the truth, accuracy, or validity of something. 

Feeling the need to verify your problems to utter strangers and unfortunately some family and friends is something that often happens to Spoonies. We even have a little spiel prepared in our heads ready for the moment the words 'But you look so normal...' are inevitably slipped into the conversation. We'll play down how sick we feel, just how exhausted of it all we are because we don't want people to think we're winging but at the same time we'll try to educate them in a round about way that leaves them more confused about exactly what's wrong with us than they were before and totally sworn off ever asking us about it again.

It's a habit we need to stop. 

The whole thing is ridiculous. If the people feel the need to prompt this panic inducing conversation then they aren't people you need to be around, maybe the first time you could be forgiving and have a go at explaining (MINUS THE AFORE MENTIONED SPEECH) how you manage to look so average when you are secretly superhuman but you would be a better person than I. My reaction tends to be to literally bite my tongue, laugh and say something about looks being deceiving in an only slightly sarcastic manner. 

You don't need their approval or acceptance. It really is that simple, I wish I had more to say about this but I kind of don't. You just don't need it. At all. 

U is for Unique

Unique - adjective Being the only one of it's kind; unlike anything else.

Sometimes when you have a chronic illness it's quite easy to become lost in the herd of others with the same illness, and that's pretty sad. 

This post is more of a challenge than an article, obviously you don't have to do and I'll have no idea if you don't but, I'll put it out there anyway.

 I challenge each and every one of you, regardless of if you're a Spoonie or not, to do something today that is totally and utterly YOU. 

It doesn't even matter if it's not that original as long as it's something that shows the world who you are. If you have an equal love for knitting and penguins then go ahead and knit yourself a chilly little buddy. Break out the sparkly roller blades and go skating. Perhaps you like poetry? Write a haiku and if you're brave enough post it on a social network of your choice. The decision is yours, just give it a go and reaffirm your individuality.
I'd love to see some of your creations or hear about your adventures.

T is for Time

Time - noun The indefinite continued progress of existence and events. 

I know that time is one of those subjects covered by every health related writer/journalist out there but I hope I'm taking a slightly different view on it. If you've read all of this before then I apologise, please forgive me and next time I will be extra original, I promise.

Being a spoonie means that quite often your symptoms are expected to worsen over time so the future can look a little bleak and it can be really hard to appreciate the time you have right now. Depression can seep into all of those little nooks and crannies that whisper insecurities about your future and turn the volume up until whispers become screams and time suddenly seems to be running out on you. 

Time is fluid, it's constant but it's flexible. Make the time to appreciate all of the great things you've got going for you right now, no matter how small they seem; people, architecture, nature, music, literature or maybe the fluffiness of your teddy bear. Find time to do something just because you can, draw chalk rainbows on the pavement because 'Why not?', do something ridiculously impractical just for the sake of doing it. After all, in a few years you may not be able to so seize the moment.

Take control of time. Shove a sock in the depression for a little while because right here and right now you can do it.

 The future will be whatever it will be, but the present is something you have the power to manipulate if only you give it a go. 

S is for Spoonie

Okay a definition of a spoon isn't really going to help so I looked around and here's what I found when I asked Google to define 'Spoonie'

Spoonie - noun This word refers to an absolutely brilliant article , 'The Spoon Theory' written by Christine Miserandino.

But then I noticed that that doesn't really explain anything, other than that Google has good taste in authors, so I delved deeper and found this.

Spoonie - Spoonies are people that live with a chronic illness; theoretically measuring personal daily abilities much as one would measure the proper amount of spoons needed for an event or occasion...sometimes having an abundance, other times coming up short. Urban Dictionary

When trying to explain what life with Lupus was like, author Christine Miserandino stumbled across an explanation that has become so large that all of the people I know with a chronic illness identify themselves as a Spoonie.

Being a Spoonie means that you have monitor everything you do, weigh up whether the effort is worth the result and then use cutlery to try and boost yourself. But it also gives friends and family members a way to relate, spoons are like a little door into the world of someone with a chronic illness. It's something tangible that the outside world can pick up and understand, if my family notice that I'm running low on energy they hide spoons in my pockets or they find the biggest spoons they can to show me that they care. 

Quite often people with chronic and invisible illnesses can be isolated from the rest of the world because it's so hard to explain why you can't do what they can. Saying you've run out of spoons or that you're already borrowing tomorrows supply gives them a physical picture to grasp, making it so much easier for both you and them.

I am a Spoonie and although it doesn't always seem it, I am very proud to be. 

R is for Rules

Rules - noun A set of explicit or understood regulations or principles governing conduct or procedure within a particular area of activity.

Unfortunately none of this comes with a manual and people always say 'Wouldn't it be lovely if life came with a rule book' but personally I think that would make life terribly boring. If everybody had to act in the same way, within the same guidelines, then wouldn't that make us all fundamentally the same person? Maybe, maybe not.

The point I'm trying to make is this; there is no right or wrong way to be 'ill'. I know I talk a lot about not being who the world wants you to be, but to be honest if that's actually who you're happy being then go right ahead. Nobody has sat down ,as far as I know, and written a set of rules on what a sick person should do. As long as whatever you're doing works for you then that's fine.

You should never feel that you can't do something because that's not what people with 'X' do, if you are a person with 'X' and you do it then that is what people with 'X' do. For example I'm going to a music festival in a few weeks and will be camping for 3 days, I've been told that obviously I'm not as ill as I say because going to festivals is not what people with Fibromyalgia do. Now, I don't remember reading that in the 'Rules and regulations for Fibromyalgia sufferers', maybe I lost my copy somewhere. But regardless of what people may think I know what I can and can't do and that is my decision, no one elses. 

So don't let anyone else set the rules for your life. It's you life, live it however you want.