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The Rocky Rollercoaster of Recovery


LisaButterfly

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Rocky... Rollercoaster... Recovery... so many words beginning with 'R', and some are easier to face and say out loud than others. 

On the phone this morning, while leaking from my knackered eyeballs like a burst water pipe, I just said a word beginning with 'R' to my GP. I can't believe I actually said it. 

He's been our family doctor since I was 10 and has watched me grow, shrink, struggle, adapt, cope, fall apart, mend, break again, come back stronger and then melt into puddles of new catastrophe over the years. My family and I are very thankful that he's the opposite of a shite doctor, and my call with him just now has reinforced that. 

Amongst all the physical and mental health issues he's supported me through, he didn't know about my past. He does now... just snippets using words I never thought I'd be able to say to him. The words just fell out my mouth like coffee does when a bit of it 'goes down the wrong way' and you can't hold the rest in when you cough. I phoned him because I was desperate for pain relief, but it seems my head was crying out to plead for more than that. 

I feel strange now, like it's all just a dream, so I've turned to my online journal to throw my tumble of thoughts at my little phone keyboard and this valued AS community of understanding souls. Let me clarify... I don't, and will never, disrespect any of you by 'throwing' words at you - they're offered with gentle sensitivity for your own circumstances and trust for your ability to empathise in a way so many others can't. 

My doctor wants to see me this afternoon (well...half of my face due to the stylish 'anti-covid' mask I'll be wearing) to talk about possible options for more help. I'm scared to death but relieved. 

I've been quietly crying out for help for so many years and I think I've finally found a voice to cry out with a bit more confidence and self-worth. I don't want to burden NHS resources, especially with a global pandemic going on, but facing my past, accepting the fact that it actually was really crap, and being able to rewrite my story with a head that can now label experiences properly, has helped me realise I matter enough to be heard and helped. 

It's the physical pain that's tipped me over the edge so often since my healing journey began, and that's what has happened now. Since my first diagnosis when I was 10, the connective tissue disorder deteriates, over and over again, and I adapt. Health professionals offer long-term management solutions (which I'm grateful for) but concrete answers have never been given because my voice has been too damn quiet, and I haven't felt I mattered enough to have them. I've just fumbled along, trying my best to cope with the impact of it all independently, with grief for the mobility I've lost, waves of terror for the unknown, but also pride for my ability to shed my skin and come out the other end stronger. 

I'm not sure what help my family doctor will offer this afternoon, but if I can use this new-found voice with confidence I think I might be able to welcome him into my 'dream team' of trusted people who are helping me 'hold on tight' during the challenging twists and turns while riding this profoundly frightening (but rewarding) rollercoaster. 

Update after my GP visit: My GP did indeed reinforce my confidence in him - he really is the opposite of a shite doctor. He's now getting the ball rolling for more help, and I now have a bit of hope for more support, concrete answers and the possibility that my pain could be managed better. It looks like an extra member joined my 'dream team' today. 

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Dear Lisa,

so well done for being able to take the steps along the road of recovery.  I know how much courage it takes to say that word..... "r***". 

I can't say that I am any further along that road than you, or that I understand the effects it has on us, or even that I know who I am, but we'll be here holding your hand and helping you, if that's OK.  

Ross, survivor.

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I celebrate the addition to your dream team. You deserve it a thousand times over. Wow, I love that you used your powerful voice to ask for help you need. I also am grateful for your supportive GP. It encourages me when I hear of other supportive individuals to show me that even people that may not have suffered trauma can be supportive. Too many betrayals from those I have trusted has made it extremely difficult to trust others. 

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@Nedders - thank you so much for your encouraging words, and I gratefully accept all hands to hold... thank you. I'd like to offer to be here for you too (if ok) - this is a tough process isn't it, and your fellow survivors on here understand what it's like. The aftermath is so complex and multi-layered. I found something quite piongant the other day when preparing an article for work; it's in relation to mental health and the road we walk on while we're heading towards being in a better place. The piece I found included this quote: 'Every step we take may seem so small, but when we look back we realise we've travelled further than we think.' 

Alongside your AS friends I offer my support with each step you take, and respect for how far you've travelled already. 

Thanks so much again. 

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@Hope321 - thank you for celebrating with me! Your words really mean a lot, thank you. I'm pleased the news of my GP has helped you - it's people like that who help restore your faith in humanity and give you hope when reaching out for help. I'm so sorry you've suffered too many betrayals from those you trusted, I understand how this can make it extremely difficult to trust others. Unfortunately there are some utter shite bags out there, but thankfully there are also good people with empathy who strive to help and support. It's about finding those supportive people (and discovering them by chance) and over time they can give you reason to trust them. After what you've been through you have every right to take your time to 'trust'. When those people (or that person) earns the right to be trusted it can be tough to accept their help, but I can say from experience that it's a relief (and a huge step on this strange healing journey) when you find you can allow yourself to trust someone enough to accept their support. 

With my 'dream team' I have full control over who is part of it... it's my call and each person needs to be trusted (on so many levels) to be a 'member' of it. No one in my dream team has experienced the type of trauma we have so they don't fully understand what the aftermath is like, but they understand me... and that means a lot. My dream team is small, but it's perfectly formed, mighty and effective. I see all my AS friends as members of my dream team now, so maybe it's bigger than I thought! And all of you on here fully understand what this journey is like so you're valued dream team members. 

You have plenty of fellow survivors here (including me) who would be honoured to be accepted into your 'dream team' (or whatever you choose to call it... if you chose to give it a name) if you decided you could build a team of people when you're ready. I hope you have trusted people in your life already - a support network that can help you work through your trauma and help you feel understood and less lonely during the aftermath. We're all here for you whenever you need us. 

I would like to add: I've been so inspired by your voice on here. I see power and courage in it, and that is encouragement to others (including me). Sending respect and thanks. 

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