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

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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34 Comments

  1. 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.

  2. 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.

  3. 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!

    • 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.

  4. 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!

  5. 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.

  6. 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.

  7. I know exactly what that relief is. Was diagnosed with Fibro 11 years ago. I beleived it but others just called me whinney and other things. Doctors at Emerg (A&E) were the worst at blowing odd Fibro.
    When I got diagnoaed wqith Ankylosing spondylitis and blood tests and MRI confirmed it and drugs could help it felt real. Like I had a valid reason for pain

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