When the first cup of coffee tastes like washing up she knows she’s losing it

11 Apr

At 6am this morning, I sat by my bedroom window, smoking a joint and listening to the geese calling on the marshland while the sun peeked through the black clouds in the sky, and I considered yesterday’s appointment with Mr B.

All Monday night, I was smoking furiously. Drinking cup after cup of strong coffee. Anything to stop myself tipping over a precarious emotional edge. Got out of bed and tidied. Went downstairs and ate half a sultana and cherry cake. Sat and stared at the muted TV screen, watching the PS3 graphics float around. By 7am the room was filled with a haze of smoke and incense, and the floor was littered with empty mugs and Rizlas. Sleep would have been impossible, so I didn’t even try.

I tied my hair up and clipped my fringe back, put on a small amount of makeup and got dressed. I almost didn’t bother making any effort at all – I felt so out of sorts – but S wanted to meet me outside the hospital before the appointment and I’ve been absent enough recently without also looking like a total horror. As usual, my mother insisted on coming with me; she has to get involved in these things. She also has an obsession with being early for every appointment and meeting, whereas I prefer to leave it to the last minute so I have time to gather my thoughts, so my anxiety levels were peaking nicely by the time we got to the hospital. S brought his coffee outside and we chatted a little about the appointment, and when he left to go back to the lab he gave me a big hug and a kiss and told me it’d all be fine.

Our hospital is like a rabbit warren, but years of medical emergencies and referrals mean I know the place like the back of my hand. However, my mother always gets convinced she’ll get lost and panics, setting me off. By the time I reached the rhematology waiting room I was a simmering mass of fear and anger, glaring at the other patients and snapping every time she tried to speak to me. An old man a few rows across from us was reading a paperback and looking around him, and I found his movements unbearable. Just as something was going to snap and I flew at him for daring to breathe, Dr B came out of his office and called me in. We chatted about the fibromyalgia diagnosis for a while; whether I still experience any symptoms and how much the pain affects me. He opened my medical records and read for a while, commenting that I spent a lot of time in the hospital. I’d been admitted eight times or so when my gallbladder got infected, and before that I’d seen gynaecologists, ear specialists, doctors for IBS, had tests for Cushing’s and hormone malfunctions, and had cameras shoved into places I don’t want to think about. My life has revolved around hospitals and clinics and, sitting in Dr B’s office, I couldn’t help wondering if this was just yet another specialist with no answers.

However, answers were provided for once. Dr B moved my limbs around, pulling and pushing on my arms and legs and poking me my shoulders and back. He made me lie down and tried to bend my legs towards my chest. Put his hand on my knee and gently bent the joint. The pain was unbearable, but I gritted my teeth and got on with it, determined to take the advice to not hide the discomfort.

I sat back down, and Dr B explained what he’d found. I have osteoarthritis in my knees, hips, hands, wrists and possibly feet and neck/spine. The pain I’ve been experiencing is from the joints degenerating, especially in my knees. The fibromyalgia diagnosis isn’t in question; I still have it, and I’ve had blood taken to test for RA. I need an ultrasound on my left foot, possibly cortisone injections, and he’s hoping to start me on Lyrica if my GP’s surgery agrees to providing such an expensive drug. I have to see my GP in a couple of weeks to discuss any findings from the blood tests and work on a plan to manage the arthritis.

It may seem strange that I thanked Dr B for the news. Even stranger that I actually smiled. I just didn’t know how to react; I nodded and listened to his advice, but all I could hear was “there’s a physical reason why you’re in pain”. I have something which can be seen on a scan, felt under a hand… I have something nobody can deny, and that’s a feeling like no other after years of misty diagnoses and judgement.

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Posted by on April 11, 2012 in Every day life


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33 responses to “When the first cup of coffee tastes like washing up she knows she’s losing it

  1. Ginger

    April 11, 2012 at 11:06 pm

    I’m glad to hear it was a helpful visit and one that provided you with solid answers. Having a treatment plan will help you a lot. It’s good to have answers!

  2. Jaen Wirefly

    April 12, 2012 at 12:29 am

    I’m sorry you’re in so much pain it seems so unfair to have BPD and all those physical conditions as well but I don’t hear any sadness in your post, just strength. Hopefully, the new meds will ease the joint pain. I’m crossing my fingers for you.

    • halfwaybetweenthegutter

      April 12, 2012 at 12:34 am

      There is sadness… it’s slowly creeping in. I’ll never do a lot of the things I wished for, and life will always involve pain. However, being diagnosed didn’t magically change anything, I just know what it is now. So in a way, I don’t feel I have a right to be sad. Thank you, Jaen.

  3. willowdot21

    April 12, 2012 at 12:38 am

    I know what you mean about being pleased to hear that you’re not imagining your symptoms and you actually have a definately identified disease. Get well. XXXXXXXXXXXX

  4. justjacqui2

    April 12, 2012 at 1:12 am

    It seems strange to congratulate someone on a medical diagnosis, but at least now you know what you’re up against. Not knowing can feel like punching at shadows while underwater. Sometimes, it just feels good to have something to fight.

  5. Cyndy Cooper

    April 12, 2012 at 2:24 am

    I am so glad you finally have a diagnosis. This is one more puzzle peice in place. So much shame falls incorrectly in the wrong places.

  6. judithatwood

    April 12, 2012 at 3:33 am

    Sweetheart, I could not be more happy for you. What a wonderful result! Not the diagnosis, but that you got a diagnosis. As you said, scannable, touchable, honest to God something wrong. You must be relieved, although I know you are is such pain. I am celebrating with you — Hopefully you can get on the Lyrica, as I’ve been told it helps. I hope you have a little peace — maybe enough to let you sleep. No more wondering if it’s in your head, or letting other people tell you that it is. A funny thing to congratulate, but Congratulations!

    • halfwaybetweenthegutter

      April 12, 2012 at 4:17 pm

      I am relieved; it’s like a huge weight of uncertainty has been lifted. I’m quite hopeful about getting Lyrica – my GP tends to push for medications regardless of cost to the NHS – so fingers crossed I’ll get it and it works. I know it won’t fix anything, but just being able to walk again would be lovely.

      It’s so nice knowing it’s not all in my head. Hopefully one day they’ll find a definite physical reason for fibro too.

  7. April

    April 12, 2012 at 5:19 am

    You have a chronic disease! Congratulations!

    I understand completely. Just knowing can be such a relief.

  8. zen and the art of borderline maintenance

    April 12, 2012 at 5:39 am

    YAY, you got some answers! I am proud you didn’t try to hide anything. I bet you feel better, that there’s very good reasons why you’re in so much pain. I mean, it sucks to hurt so much, but now you have REASONS.

    • halfwaybetweenthegutter

      April 12, 2012 at 2:05 pm

      Yep, REASONS! I love reasons. It can all start to make sense to me now, rather than leaving me wondering if it’s all in my head. I know the pain is real, at last.

      To be honest, I found Dr B really easy to talk to, so didn’t have too much of a struggle with expressing how I feel. He was lovely.

  9. ...But She's Crazy

    April 12, 2012 at 6:50 am

    I’m so relieved for you that you finally have a diagnosis. I remember feeling the same way when I was diagnosed with bipolar. Also, what a terrific post title – that’s one of my favorite Belle and Sebastian songs. :-)

    • halfwaybetweenthegutter

      April 12, 2012 at 2:03 pm

      Tigermilk is my second favourite album of all time :D I take far too many post titles from that album!

      Thanks a lot for the comment, it’s so nice to see people actually understanding what I’m feeling. It’s a relief, even though it’s not a nice diagnosis.

  10. NZ Cate

    April 12, 2012 at 8:53 am

    I’m so glad you got some answers. Being told there is a clear reason for pain is always a good thing when people have tried to swipe it away with MI.

    • halfwaybetweenthegutter

      April 12, 2012 at 2:02 pm

      It is indeed; they can’t use that excuse now, and in a way that feel empowering.

  11. iambeautifulandconfident

    April 12, 2012 at 8:57 am

    Although I’m sure that finding you have osteoarthritis isn’t exactly brilliant news, I’m so glad that you finally have a diagnosis.

    • halfwaybetweenthegutter

      April 12, 2012 at 2:01 pm

      It’s not the best news I’ve ever said, for sure. Still, it’s nice to finally have an answer after years of wondering. Thank you.

  12. ryoko861

    April 12, 2012 at 12:56 pm

    Finally! Hopefully, this will be the beginning of some relief! Not the greatest news, but there’s a reason now that like you said, is something that can’t be denied! I’m relieved for you.

    • halfwaybetweenthegutter

      April 12, 2012 at 1:59 pm

      Thanks Ryoko! It’s certainly an emotional relief; years of wondering and now I have an answer. Yeah it’s not the nicest result, but at least I now know it’s something which can be managed to an extent, which can only be a positive.

  13. blessedthorn

    April 12, 2012 at 5:55 pm

    I know it’s weird to congratulate you, but I am glad he was able to find a physical link to the pain you’re experiencing. While it’s still a hard road, having a doctor *believe* you can be edifying. My prayers are with you as you try Lyrica (I also hope the money will come through for that as well). Keep swimming!

  14. strugglingwithbipolar

    April 12, 2012 at 10:41 pm

    I am sorry you are in so much pain, BUT I am happy to hear you have received an accurate diagnosis. It sounds like this is something that can be treated. I also hope that you are able to try Lyrica and that you find it helpful!

  15. Unconfirmed Bachelorette

    April 13, 2012 at 4:28 pm

    Thank goodness you have an answer and no longer have to fight an invisible enemy.

  16. faithhopechocolate

    April 13, 2012 at 5:30 pm

    Getting a diagnosis means that they can do something about your symptoms. This is definitely good news. Congratulations.

  17. My Ox is a Moron

    April 13, 2012 at 9:13 pm

    It actually can be seen! That is sooo awesome. Having lived with “unseen” chronic illness such as bipolar or anxiety has been difficult. Neither can be proved by a test or pictures. Physical proof seems to be needed for some people to believe that it is real.

  18. dreamingthruthetwilight

    April 14, 2012 at 5:48 pm

    Hope your pain reduces with proper medication. Glad that you can look at the bright side of things even in the midst of such physical discomfort. I guess you know that about yourself:-)

  19. smaking

    April 15, 2012 at 12:59 pm

    I have been there so many times with doctors telling me they don’t know what’s wrong. I have had so many different diagnosis, it’s hard to know what to believe. I feel for your pain. Having fibromyalgia myself I know what it’s like. I also know that a lot of people don’t believe it even exists. Of course, most people I know know don’t believe my mental conditions exist either (Borderline Personality Disorder, Anxiety and Panic attacks, depression, ADD). Of course, unless you have experienced any of these things how could anyone know what they feel like? Then of course there are those that just wish to bury their head in the sand. I am happy to know there is someone else who understands, but not happy that there is someone else who has to feel the pain. I hope that someone can finally start easing your pain.

  20. bgillen

    April 16, 2012 at 2:01 pm

    One of the better feelings in life is validation.

  21. lostnchina

    April 17, 2012 at 2:53 pm

    Wow. Sorry you’re in such pain. I know it can’t be easy. And I hope your writing helps alleviate some of the anxiety and loneliness.


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