Spooky, sweet and sparkly accessories for gals and ghouls 'allergic' to the norm.
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"I'm coming out" The girl behind the sparkles...

behind the scenes chronic illness disability disabled me tamsyn velvetvolcano

I have tried for a long time to keep my business and my private life as separate as they possibly can be. Partly because I am deeply confused on where the line is drawn for maintaining some professionalism (haha!) and partly to retain some sanity.
You see, VelvetVolcano is my only true escape from the rest of my life, which revolves entirely around my illness. I am unfortunately not able to enjoy any hobbies other than Netflix watching (which honestly, is a freaking godsend for my situation!), the occasional video game and very occasionally a 'walk' with my dogs and partner (I walk a couple of metres being supported by my partner while my knees buckle and then sit down while they run around in the field :) ). VV is the special, sparkly land I am able to escape to when my body allows me some time away from pain. 
I feel like it may be time (especially in light of my 'Planet VelvetVolcano' Indiegogo Campaign a little while ago where I mention 'the illness') to shed some light on 'the girl behind the sparkles' and how important VelvetVolcano is to me (and therefore all of you who support it and therefore me..) and why.

Throughout the majority of my life I have been sick in some manner. It started out fairly simply, nothing too concerning, things a lot of kids struggle with at some point.. allergies, asthma... I was also born with a condition called Brown's Eye Syndrome, but that has not caused me too much trouble and I barely notice it. 
My allergies and asthma progressed to the point where my seasonal allergies were so bad I had to take time off of school repeatedly, I kept getting recurrent chest infections, eventually bronchitis and then at age 11 I contracted Pneumonia and one of my lungs collapsed. 
I was in hospital for around 2 weeks, where I met some truly lovely nurses and doctors who re-inflated my lung and drained the fluid. I also met a girl, around age 16, who had attempted suicide. I didn't realise until very recently how much this had affected me at the time. 

Once I had healed enough to go back to school, I found that everything had changed. Except no-one around me had changed. That was the problem. I had changed so hugely, I had such a different perspective on life and my own mortality (which I had never considered before then) and all of my friends were still children (as they should have been). I felt extremely isolated and this carried on throughout my teenage years and got worse with time. 
As we moved into secondary school, I was an easy target for bullies, I was having a huge identity crisis as I felt like I had nothing in common with whatever group of people I happened to be in at the time and so some cruel kids decided to make me their target. 
At age 12 I was diagnosed with depression and was plagued with constant thoughts of suicide. I began pulling out my hair, which I later realised, after one of my friends noticed the bald spot on my head,  was a disorder called 'trichotillomania' I had also begun compulsively picking my skin till it bled and scarred ('dermatillomania').
Around this time I also began 'hallucinating', they started with somewhat comforting images like seeing Mario (from Super Mario Bros) jumping over some buildings out of one of our school windows (while standing at the top of a set of stairs a bully had tried to push me down a while before, I now believe that was a reaction to my anxiety about that event, trying to comfort myself). They later became more violent and I particularly remember a little while after Madeleine McCann went missing that I 'saw' the sky turn red and start 'falling'... I felt so connected to that tragedy in that moment and got completely wrapped up in it. Since then I have also 'seen' very graphic images that I have realised is a form of OCD, thankfully that I am able to manage more effectively these days, but in particularly vulnerable times my walls can come down to it and I am plagued with lots of horrible visuals and very realistic and horrible dreams too that make my sleep and therefore energy levels even more compromised. 

At age 14 I started becoming extremely fatigued, my joints started hurting and I felt very ill a lot of the time. Over the course of my time at secondary school I missed a lot of days due to anxiety, my physical health (I was also having a lot of dental treatment over this time including an operation) and depression. My attendance was 66%. No-one (especially me) understood why I was feeling this way and I got the brush off from professionals (and people around me) for many years. I was "too young" to be feeling this way, so it must not exist. I was stuck between feeling this pain and exhaustion and people telling me it wasn't real, it was all in my head (because I already had mental health issues, that was an easy way to explain away my symptoms that they couldn't figure out). 
Finally at age 18 I was diagnosed first with Hypermobility (which allowed me to have a scribe for my exams, which was a huge help in one respect but given my increasingly poor memory cognition it almost made it harder because I was constantly stumbling over my words and getting confused while trying to lay out my thoughts in a coherent manner :P ) and finally(!!) Fibromyalgia. 
I was put on various forms of medication, all of which didn't make a huge amount of difference or just made other issues worse (or gave me a whole range of new symptoms). 
Over time my illness progressed, I tried various different natural treatments, different diet adjustments etc and nothing 'worked'. My allergies got ten times worse and I developed intolerances to an alarming amount of foods (my diet is extremely limited, there are literally 10 foods I can eat when I'm doing well, but this often gets reduced down to 2-3 during flare ups) and sometimes even the foods I can usually eat will cause pain and severe nausea, IBS issues, joint/muscle pain, allergic reactions etc. I started getting extreme lower abdominal pain and was admitted to hospital multiple times, with the paramedics coming out a few times between that too. I couldn't eat at all for months, lost 2 stone and could only take in carrot and apple juice. There was a constant burning in my stomach and every evening I would be in agony all throughout my torso (which would often spread elsewhere too) and barely able to move while my partner did whatever he could to ease my pain. Around this time my partner or Dad often had to carry me up the stairs, my partner was having to feed me my pain killers because I didn't have the strength to hold them or the water myself, he also had to help me to the toilet, to bathe etc. 
I have had periods of remission since then, some small breakthroughs and some times when I have been feeling a lot better... but right now I seem to be back to my worse yet again and even worse still. 
I have lost a lot more weight, have a lot of muscle wastage and am using a wheelchair on any trips to the doctors etc as I cannot walk further than a few metres and need assistance with most things, I then need to rest as I am so exhausted / my legs hurt too much. I am waiting on 10 blood tests, stool and urine samples, appointments for allergy patch testing (my last reaction resulted in an ambulance and scary A&E visit), a CT scan of my chest, an appointment with the pain clinic and an appointment with a neurologist as well as monitoring from my gastroenterologist and rheumatologist. I cannot go out without my air purifier or filtered face mask as chemicals, environmental pollution, dust etc all make my chest very tight and painful and give me breathing difficulties as well as bringing on migraines, sore throat etc.
My mental health is on most days at it's worst, though I am constantly striving to keep a handle on it and not lose myself to my illnesses... I want to be a positive role model for others struggling with chronic illness and disability... which is another reason VV is so important.
But for a long time I haven't been able to dedicate much time at all to my business (about 2 hours in total every couple of days), which has been extremely difficult as my true self is a workaholic and an eternal 'creative'. This has partly been because I only have a small amount of energy each day and sometimes that is taken up either by a trip to the doctors (and then I cannot do anything else that day other than watching something on my computer or 'maybe' playing a video game) or by showering (with help) etc. and partly because of overwhelming pain, migraines and due to the joints in my my right hand becoming very stiff and painful and unable to bend my finger joints like I need to to do certain parts of my work etc.

Now, I am not talking about this to gain any sympathy or to 'moan' or anything like that.. but there has been such a huge divide between my business and my declining health and I have felt so torn in both directions that I feel I must now be honest about my 'real life' because it now effects my work so much... I don't want it to. I want to be the girl you see in the middle of this photo, not the girl on the outside, but that is where I am at and I must accept it for the time being in order to actually gain some balance and hopefully get better.

#SickButInvisible

So, I am coming out. I am chronically ill and disabled. I am also a business owner, designer, creator, artist, dreamer. My health problems impact my work a lot so I may sometimes not respond to emails or queries as quickly as I'd like (though I do usually push myself even when I'm feeling badly to do so as I value you all so much  ) or my order processing times may be longer than another business or a large company... but I am so passionate about my work. Everything you see in my shop and receive in the post :) has so much love weaved into it. VelvetVolcano is my baby, I started my business while struggling with chronic illness and I will continue that way, just with adjustments :). I will not give her up without a fight. 

Much love, best wishes and eternal sparklies to you all!

Tamsyn
XOXO



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  • Emma Stripp on

    Hello there,

    I know what it’s like to having an incurable invisible illness. I too have Fibromyalgia, bad bowel problems, which took me to hospital with blockages. Ibs, colitis, Celiac, severe depression throughout my childhood until tried to commit suicide. I’m on enough to choke an elephant and most days it’s only scraping the surface of my pains. So for you to come out and tell us all I commend you on your bravery. I love your designs and I’ll be buying the raspberry hat and gloves shortly b4 it gets too cold, even though my body feels the cold terribly. Best wishes to you and hope you’ve pain free days soon. Hugs to you. Ig emma_s82, Emma Stripp.

  • Lika on

    I just wanted to say how inspiring it was to see this post, and to hear your struggles. I also am a chronically ill/disabled person who runs a Gothic/Alternative eshop. I started my shop to help my Mom and I, since we both have the same illnesses (thank you genetics; well, not really .‘). I have a heart condition, Chronic Fatigue Syndrome, severe sinus problems, severe migraines, colitis (recently upgraded to ulcerative colitis due to stress), anxiety, panic attacks, PMDD, and bipolar disorder, among other things. I recently suspected that I might also have Fibromyalgia, but since it’s so hard to test for CFS and Fibro, only time will tell I suppose. I understand you completely and I love your shop very much! :D ♡ I just want you to know that you are not alone, I feel your pain and struggles, on both the health and the shop aspects. Also, I’m so glad that you have a great support system! :) ♡ I wish I knew what that was like since it’s just my Mom and I, and my Mom is in her 70s and sick so I have to be strong for both of us through all this illness, it’s quite hard. I understand your mention about being told you’re “too young” to be ill, I get that all the time (I’m only 30), and have had painful and debilitating colitis since I’m 4 years old and my heart condition since I’m 11. I too had bronchitis as a child, and multiple pneumonias (I nearly died a few times due to some being drug-resistant). Always remember that even making one tiny thing (or a part of a thing) or just packing up an item to ship it, that is a great accomplishment for people like us, and you should feel very proud. That is something I forget, but I often try to remind myself :) ♡ Feel free to get in touch if you ever want to chat, I look forward to seeing all your lovely new creations! big hugs ♡ Xx

  • Lisa Weston on

    Wow. I didn’t realise how much you were dealing with, and am now even more glad that I supported your Indiegogo! Your health is the most important thing. None of us should complain if we have to wait a little longer for our trinkets (after all, that’s all they are!) given how hard things are for you. I hope this next round of tests and appointments gives you some more answers and solutions. Most importantly, I will continue to support your business because I love your stuff! I’ll be taking the business cards you sent with my last order when I wear my cow and broccoli to Vegfest in October, so hopefully that will drum up some business for you too. Sending loads of positive thoughts your way. Xx

  • Cat clegg on

    Hearing you talk like this is truly amazing. I’ve suffered myself from chronic illness/ depression since I was 18. I now live reasonably well but with pain. You should always feel able to talk, moan, complain and vent if you need too. Although I admire how wonderfully positive you are everyone has a right to talk if they need it.
    Please feel free to get in touch for a chat if you ever feel the need. Be it to discuss your amazing products or otherwise. I’m counting down the days till I can wear my spider web beanie again.

    Loads of love

    Cat


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