I have been thinking about writing a blog for months and keep putting it off for a million different random reasons. But I think it’s time to get on and do this…
Over the last four years or so, I have found my life redefined slowly through a number of circumstances that have brought me to where I am today. I’m not going to go too much into the story of those last few years today. Instead, I am going to try to focus on introducing me as I am today. Why? Well, as a normal person living with a less than normal set of cards to play with, I’ve realised that sharing is good. Maybe in telling parts of my own story I can encourage or just help someone else feel a little less alone in their experiences. And honestly, I love writing, so why not?
So, time for introductions! Who is Cara? Well, I am a 32 year old Londoner, I currently live in my own little nest for one, I have two sisters, a brother in-law, two beautiful nieces who are the most fantastic little things in my life – I absolutely love being an auntie! My parents have been married 36 years and live nearby, I have amazing wonderful friends both near and far. I have worked in the web design/development and technology industry in the financial services world for more than 10 years and have been fortunate enough to build and lead my own team. I bake my own bread and I love to cook – food and drink are to be enjoyed in my philosophy – if I throw a party, you should come hungry and thirsty as there is always a lot of food and drink! I love my Mini Cooper, I’m a fan of F1, football (life long Gooner), tennis and most sports – in my teens I was a competitive athlete (200m, relay and long jump), I love to draw (check out my art instagram account for more on that), I love to sing and dance around. I have a Christian faith – I don’t feel comfortable labelling myself as a specific brand, I’ve been raised SDA and I just try to live a life that is about love of God and others, just as Jesus did. I believe in equality, freedom and I like to be open-minded – some might say I could be called a modern feminist mixed up with a kinda traditional girl (by no means am I about to go burn my bra!). I enjoy travelling when I can, my favourite place in the world is Italy, one of the most treasured persons in my life is Italian, he influenced some of my love of Italian culture and inspired me learned to speak Italian for myself (although, honestly, I think in a large part it is just that for me, somehow in that part of the world, I feel at home – non lo so, forse é il mio nome Italiano?). I have to say – I am blessed and I have a lot of good things in my life.
Now we’ve been introduced, let me tell you about me – hang on, didn’t I just do that? Well, yes, but that’s the shiny, friendly, best foot forward, put on your resume version of me – I am all of what I’ve told you, but then there is more. I can be categorised as a fully fledged spoonie – if you are unfamiliar with the spoon theory you can read about it here. I live my life with more than one auto-immune condition the most significant being Ankylosing Spondylitis (AS) this is a type of Arthritis that affects my pelvis, spine and ribs it does not have a cure and is degenerative in nature – it can cause the bones in the spine to eventually fuse. My immune system attacks my joints in these areas causing a severe inflammatory response – as a result of this I have a lot of back and pelvic pain, I can’t stand, sit or lie in a static position comfortably for long periods, I am stiff in the mornings and it takes me a long time to get ready, getting ready in an hour is a rush for me. When I say I am having a flare up, this generally means my pelvis, spine and/or ribs are causing me extreme levels of pain and severe fatigue that is so overwhelming it is hard to describe. Flare-ups come in cycles so sometimes I am pretty good and just have low levels of pain and stiffness, I do my best to maintain good flexibility and activity levels – doing this helps to manage this illness – often it is not easy. In addition to the AS, I have a few other health challenges:
- Pernicious Anaemia – my immune system produces an anti-body that prevents me from being able to absorb dietary B12 – this can cause severe fatigue, mental fogginess, breathlessness, brittle nails, stomach/digestive issues and left untreated can cause nerve damage. I have a B12 injection regularly to manage my PA.
(If you are vegan, you can end up B12 deficient which would cause the same symptoms. The vegan diet doesn’t naturally contain B12 – so if you are a vegan – please, please, please take a supplement or buy and regularly consume products that have been fortified with B12 – if you are a veggie, make sure you get enough from eggs, milk, cheese etc.)
- Chronic Uveitis (linked to the AS) – in this case, my immune system goes for the eyes (in my weird case, always the left eye!). Uveitis is an inflammation of the iris, it is painful and causes the eye to appear very red and become light sensitive – when a bad flare up happens, you will find me with sunglasses firmly fixed to my face.
Uveitis is normally treated with dilating drops to manage the pain and steroids to take down the inflammation. I am a little unlucky and for me steroids cause my eye pressure goes sky high – this is very dangerous as it can cause permanent damage to the eye and vision loss. So when I get a flare up I have the dilation, steroids, plus a bunch of glaucoma drops to keep the eye pressure under control alongside an anti-inflammatory eye drop to reduce the steroid dose.
- IBS – Irritable Bowel Syndrome – again, an auto-immune condition that can be linked to my AS – there are times where I can be in a lot of pain, feel extremely bloated and nauseous, have terrible wind and diarrhoea or constipation. I also know I have some minor ulceration in part of my bowel and a hiatus hernia in the stomach. I try to manage this as best I can through diet but it can be very hit & miss at times.
- PCOS – Polycystic Ovarian Syndrome, this has caused me all kinds of issues with my menstrual cycle, heavy long periods, with flooding and cramps and occasional random abdominal pain. A side effect of this condition is being extremely prone to Iron Deficiency Anaemia too (yes, I have 2 types of anaemia). PCOS also causes hormonal imbalance, so things like body hair and skin breakouts have to be looked after. Again, diet and lifestyle and medication can help with this, but it doesn’t quite go away.
- Fibroids – I have just a couple of small fibroids – they can however cause many of the same symptoms of PCOS. In the main, I rarely think of these having undergone a couple of small surgical procedures in the past, I now find lifestyle choices keep these in check.
- Generally a bit accident prone – I have managed a fractured lower back, a hip injury that had to be surgically repaired, fractured toes, I partially severed a finger once (it’s healed but I don’t have normal sensation in it anymore), subluxation of my clavicle, concussions, a number of random falls where I’ve done myself damage and I can often be found with some random bruise from a mishap!
- Depression – Last year I was diagnosed by my GP as having depression – it’s been a strange thing to get my head around, but I think it’s important to be honest about the mental struggle – it is as real as the physical – maybe one of my biggest challenges in life.
So, this is the part where when having this conversation face to face people look at me all wide eyed and say ‘I’m so sorry!’. (And generally speaking I will not have divulged my full list – normally I stick with the AS on its own or maybe the Uveitis if I’m having a flare – that and the two significant bereavements I have had this year.) This phrase has always confused me a little bit – why do we as human beings apologise to others for something that is completely unrelated to any action of our own? Sometimes I think it’s a way to close a really difficult conversation politely while avoiding the dreaded verbal diarrhoea of thoughts related to this kind of revelation, which is probably something along the lines of…
‘OH MY! that’s a lot of information to take in! That’s a lot to deal with, how come you don’t talk about it much? How do you manage it all? It must be so hard to deal with!! I didn’t realise that you had so much on your plate to deal with and here I am treating you like a normal person not checking if you need anything or making adjustments for you, are you in pain right now? I should be so much more considerate, I can’t believe I didn’t notice that your life is not so straightforward, I’m so sorry!’.
So yes, it’s a weird thing to say, but you know what? I appreciate the sentiment. And if you want to know what to say, or wonder what to do if sometimes if you notice I seem like I’m a little bit away or quiet, just a simple ‘Are you OK, do you need anything?’ is perfectly fine.
Here’s the thing though, and I am hoping other spoonies know what I mean here – the default response often is – ‘I’m ok, I’m surviving, I’ll be fine’ (said whilst nodding slowly with a gentle half smile). Again, this is just the same as the above – it’s a way of closing a difficult conversation. And you know what? that’s OK! Not everyone needs to hear all of the details! Sometimes all I need is a moment to myself to take a few breaths and plant my feet. I don’t find it helpful to discuss these things in detail with everyone, certainly not how I feel about it all.
What I have learned though, is how important it is to have someone, somewhere with whom you feel safe to fall apart on the days where you are overwhelmed. Support is absolutely essential to living life with any kind of chronic condition, but it’s important that it’s really support and not just a pity party that can drag you further down. If you are a fellow spoonie, find people who will just listen when you need them, who will encourage you when you need it and help you to do the basic tasks you can struggle with on a bad day – keep those people close. Also, give yourself permission to be just a person to to the wider world, if you need a little help, it’s ok to say, ‘this is really difficult for me right now, can you help me?’ you don’t even have to explain the wider context a lot of the time. And also remember, you are also a person who has a light to shine… something to bring to the world and it is actually good to be able to say ‘I’ll be fine‘ despite everything. Not because your illness is going to go away or your life is going to be easy, but because you are willing to still be YOU and do what you can to share the light that is inside you – and if you can do that, YOU will be fine.
I am a spoonie, but I am absolutely resolute to be more than just my illness – I don’t want my identity to be defined solely by my illness. It’s a massive part of my life, it has changed who I am, but I am still so much more and hopefully through this blog, I can share a bit more with you…