Thursday, May 08, 2014

I've got something to say.

Maybe grab a cuppa, this is a long one...

Earlier this week, I cried with a big group of strangers.

This isn't just a new hobby that I've taken up as a Tuesday afternoon affair, nor was it an expected or planned reaction to what I thought was just going to be an informative event. Actually, what it was was a realisation. A realisation about myself, my health, other people and gratitude.

I've spoken a bit in the past about Deep Vein Thrombosis. Indeed this blog was reborn a couple of years ago following my diagnosis and a desire to fill a void as the world I was used to and knew how to survive in was re-landscaped and I started to learn how to readjust my lifestyle. Along with that came the forced realignment of expectations and a change in the way I viewed myself.

My space on the internet was never really intended to be somewhere I vented about my health; I just wanted to educate people about my condition because it is something which can affect literally anybody and I didn't want anybody to come across it like I did and not know what was happening. I didn't want to complain about my experience, nor gain anybody's sympathy, through my posts about DVT and hospital visits etc, just to raise awareness. This was certainly fuelled by the other things that have been going on in my personal life and those closest to me in the last few years, meaning that as much as my illness had completely shaken up life as I knew it, I had this new-found sense of perspective that discouraged me from taking it too seriously. I'd had a rough time, sure, but the way I saw it, I felt lucky and humbled to be alive and that's as far as it went.

There were far more pressing and heart-breaking things that needed my attention and that of my closest friends and family, that I felt like I didn't want anybody to worry about me. I was fine, on the mend, learning to cope and had achieved some pretty cool stuff like finally finishing my degree and getting a job. Life had changed but I'd received amazing medical care, had a helpful operation and had got to know my physical limits.

Naturally, putting a positive spin on things that aren't all that positive will catch up with you from time to time. The event I went to this week was the first ever Lifeblood Thrombosis Patients' Day at St Thomas' Hospital, London. I had signed up to attend because I like knowing as much as I can about most things, especially when it comes to my own health. I had expected the day to be an educating experience from a medical perspective but I hadn't thought it would be such an emotional one. Hearing other patients, similar to my age, tell their stories unlocked this grief I suppose I had been hiding all this time.

I realised that for months and months, I had been plodding along trying to explain what it feels like everyday even though you cannot see that there is anything wrong. More accurately, I'd given up attempts to explain because I'd been met with comments like "Why are you still unwell? It's been ages" and "It must be psychological". People's ignorance and audacity to air it had discouraged me from voicing what it was actually like. At the same time, the knock-on effects of the illness became more and more part of my everyday self and I'd slowly started to forget the trauma I'd been through as the physical and lifestyle adjustments I'd made became more ingrained in my routine and almost taken for granted. I was beginning to forget that I was ill and that was a wonderful feeling. I didn't ever want to be known as the "girl with the blood clot" and I was finally teaching myself to shake off this label.

The words that I was hearing explaining other's experiences could have been lifted from my own tales. Listening to other people describe things like taking a rest day after a busy one, spending most of life in pyjamas, dragging their leg, having to cancel plans, constantly feeling exhausted, apologising for needing to sit down or stand up or putting their leg up, daily pain, a love/hate relationship with compression stockings, feeling lost and lonely, made me realise that I had forgotten how far I have come. I'd been ignoring the reality of my situation and that works a lot of the time but there was a time when these things were not things that I took for granted, not part of my everyday life. I'd gone from not being able to place my foot on the floor, not being able to sit up for longer than 30 seconds, struggling to get by on even the strongest medication, needing help getting out of bed, being pushed around in a wheelchair, being stopped in the street to be asked what had happened to me to have to be using crutches, being stared at and obviously spoken about for using a stick, to making tiny steps forward to eventually get to where I am now. I'd vented my frustration to my family and those friends who are pretty much family anyway, and their support was unbelievably helpful, but if you put me in a hospital where I'd been rushed into A&E before, or if I walk past a ward I'd spent nights in agony, or I meet with people who know how vulnerable I'd been but not reached out, then those feelings get tucked away and I sit biting my lip for want of trapping the tears.

And here these strangers were, articulating exactly how I felt. Without knowing me at all, they knew all of my innermost secrets, worries and feelings of uncertainty. They knew what I had been through and what it is like because they had been there and are there too. So I cried. I cried because I hadn't been able to articulate how I had been feeling all this time for fear it would be belittled and not serious enough to warrant airtime. I cried because these people knew that when someone asks "How's the leg?" what you really want them to be asking is "How are you coping?" and then be there for you without asking for it. I cried because they had taken their illness and the frustrations that come with it, and positively channelled that into making a change in a variety of ways, such as fundraising for Lifeblood with their friends and making connections to psychologically support fellow sufferers. I cried because they re-emphasised how lucky I am to be here and that I've had access to such incredible treatment. And these strangers were receptive, they were warm and they cried with me too. They recognised the importance of somebody just listening, just being there and if they understand it, well that's just a ridiculously comforting bonus.

What I would like to say is the following:

1) When you're going through a difficult time - whatever that might be - it is all too easy to think that nobody understands what it's like. It's true that most people won't get it and will throw about insensitive comments that stick with you longer than you'd like them to. But, however unique our situations may seem, we are not the only people who have experienced them. We are not as alone as we think. It may take a bit of time to find them, but when you feel ready to, try - whether that's online, at a support group, in a friend or by complete accident.

2) Whatever comments are thrown your way, never feel like you need approval for how you're feeling and whether it is worthy enough. Keep perspective in mind, but don't let somebody who has no idea what you've been through dictate how you approach your coping mechanisms. Only you know how things work for you, what your body is capable of, whether you need to rest, what adjustments need to be made, or how much time something completely personal to you takes.

3) Who do you love? What are you doing about it? If you care about somebody, please show them. Consistency is key but it's rarely too late to start that.

My day with Lifeblood wasn't all tears. I became even more appreciative of the care I have received, the quality of the medical teams looking after me and the genius procedure I have had which hopefully has set me up for long-term recovery. I heard stories of those who have found themselves battling clots for years and years with a strong smile on their face and unwavering positivity and gratitude for life, and those who have lost loved ones suddenly. Like I mentioned in this list I drew up a few weeks ago, gratitude gives me a bit of a wake-up call and the realisations I experienced have given me a much better idea of the attitude I wish to go forward with. I'm going to take inspiration from the current fundraisers and follow their lead. I'm going to go back to not dwelling on where I find myself having now almost cleansed myself of the negative responses I've had. The hugs and sweet words of encouragement are things that I'm going to focus on and take forward with me.

If you've read down this far, congratulations and thank you. I'll go back to posting about naughty kitten tales and ridiculously aesthetically pleasing food soon enough, but I couldn't not share these revelations with you. Blogging is a glossy version of events a lot of the time and although I've barely scratched the surface with this topic and don't intend to talk too much about personal matters, I hope this helps you feel strong enough to stand up for yourself and your health.

I'll leave you with a small request, if that's okay with you. I met the founder of the website "Take Time Out", who is fighting to raise awareness of Deep Vein Thrombosis and Pulmonary Embolisms after sadly losing his son, Chris Staniforth, very suddenly from DVT. His message is a very practical one - take time out. Whether you're behind a desk, in front of a games console, during a flight or on a coach, get up and move around at regular intervals to reduce your risk of acquiring a blood clot. They really do not discriminate against young or old. Once you've had a look at his website, could you forward it and/or the message to a few people you know and ask them to do the same? We might all be able to save a few lives without even knowing it.

Thank you again for reading.

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  1. Beautiful post, your honesty nearly had me in tears. Completely admire your bravery.
    All the best.

    Alessia |

  2. Oh i wish i could give you such a huge huge hug! I am an idiot and had to go and get a tissue half way through this! Beeta you are so brave and so strong and even if somewhere buried deep inside you don't always feel that, you should know that you are. You have been through such alot and are such an inspiration to anybody else going through/or who might go through what you have. And an education to people like me who never really had a clue what DVT even was. I admire you such alot and have a massive deal of respect for you, and I am so glad i found you in this massive huge and whopping world of web. Stay strong and keep doing what you are doing my dear dear friend. Sending you so much love xxxxxxxxxxxx

  3. Grace Jackson8:01 am

    Beautifully written Beeta! And on a subject about which I knew nothing before. I will definitely pass on the message, as well as recommending your blog. All my best wishes, Grace xxx

  4. I had no idea you were going through all this! What a fantastic post and a real insight for someone who is completely ignorant of DVT - I'm now going to read all your older posts on it. I'm glad you've found people going through the same thing, the wonderful combination of people not knowing, but really knowing you can be a true reliever. I hope you're feeling tip top now x

  5. I just stumbled along your blog what a deep post. I actually learned so much. Hope you feel better. Because even writing is very therapeutic.

    Meg | Meghan Silva's Blog

  6. whhaa I do not know what to say - do i ever? You are such a wonderful human being. I'm guilty of not knowing what you have been going through daily etc but knowing you have dvt. I'm so glad you went to this day and took something from it AND shared it with us. My bf is a gamer, so will make sure he looks at that site too. Your way of thinking is something I'm going to try myself... what would bee do?! #wwbd
    You do make me smile, and reflect on life in a more positive light. you star!

  7. I think your small request is something everyone should take on board. You are so inspiring, Beeta, as are all those fundraising. I really don't know what else to say except that your words will be helping people more than you realise! x

  8. Aw Bee it was very brave of you to write this post, and I know it will help a lot of people :) xxx

  9. I read your earlier post about DVT just this week and remember thinking 'wow, she's so matter of fact about it' - I guess you're right, it does catch up with you after a while and there's nothing you can do but let it all out. Was it incredibly cathartic?
    Thank you too for your top tips at the end (yep, I got there. In fact I couldn't tear my eyes away from the screen - spilt tea down my shirt in the process!) they're things we would all do well to remember whether we're battling something like DVT or just in day to day life.
    Thank you Bee for once again completely and utterly inspiring me with your honesty and attitude, you're just wonderful.
    M x xxxx

    And #wwbd is now totally a thing!

  10. I think we all grieve for the life we once had. I watch people running, jumping, even going up stairs two at a time and feel sad that I can't do those things any more. There's a lot of help for the physical aspects of having a DVT but next to nothing offered for the psychological impact.

    Having said that...I wasn't offered any help from a physio after my first clot. I had to re-learn walking by myself and it would take me a painful half an hour to do a five minute walk to the bus stop. In hindsight, I should have been at the GP asking for help, but I was pretty clueless about the whole thing back then.

    Thanks for the post, Bee. I did wonder if you'd gone to the Lifeblood day. It's always useful to speak to people who're in the same position as you, because as wonderful as doctors are, they just don't get it.

  11. I had no idea that you were coping with this and I must admit that before your post, I had no idea about how extensive the impact of DVT could be, it's something I've only really heard about when flying before. I'm glad that you found a group of people who understand the struggles of it and who know what you're going through. All the best.

  12. This is a brilliant post. I had very little knowledge of DVT at all before reading this but have since gone a done a little research. I suffer from ME / CFS and am all too familiar with the "Why are you still unwell? It's been ages" and "It must be psychological" comments. I started my blog for very similar reasons you described in this post. I have found talking to other who have experienced similar things to have made a huge difference to me and I'm glad to hear you felt the benefits of this too. I'm all for putting a positive spin on challenging situations but sometimes that release of emotion that comes with a good old cry is definitely the best thing.

    Thanks for sharing this.

    Faye |

  13. You are amazing, I bloody love you and you are such a massive inspiration to me :) xx