I never expected to feel so much frustration when life dictates that I can’t write. Well, not can’t… just the feeling that I have nothing worthwhile to say. I never expected to feel angry at myself when I feel unable to reply to comments on my blog, or respond to advice. Heck, I never even expected to get comments. I feel like I should apologise for seeming aloof or unresponsive.

It’s not that I’m depressed (I’m not) or particularly stressed out (again, I’m not); I’m just tired. Tiredness is a strange thing. We all experience it, so you’d think that carrying on as normal wouldn’t be that difficult. Still, the overwhelming sense of fatigue has flipped a switch somewhere in my brain and triggered an apathy I can’t seem to shake.

Of course, putting off writing makes things even more difficult, because I now feel a sense of responsibility to myself to put everything down on screen; and I have a lot to write about. Sure, I have nothing worthwhile to do today so I have plenty of time… but part of me just wants to curl up in bed with a cup of coffee and read, rather than have to think about things.

I saw my GP this morning. I woke fifteen minutes before my alarm went off, but still managed to be five minutes late even though the surgery is only around the corner. I just couldn’t motivate myself. Luckily, appointments were running behind anyway, so although I had a small panic it didn’t turn into a full-force freak out. As I sat in the waiting room I thought about how often I’d seen those same plastic chairs, the same Comic-Sans printed signs advising on chlamydia testing, and the same slightly scuffed carpet. I thought about how so much of my life has been spent in GP waiting rooms and hospitals, and realised that it was a depressingly large amount of time. As a result, I found myself apologising to my doctor for taking up so much of his time. He said there was no need to be sorry, but I still felt guilty. He must be sick of seeing my face.

I told him how unhappy I was with the neurology appointment. Although the anger has long gone, I’m still upset that I wasn’t taken seriously. Of course that’s nothing new, but I’m growing tired of having everything blamed on my age, or being told that people my age can’t possibly have anything wrong with them. How old do I have to be before I’m listened to?

My GP agreed with me that a re-referral probably wouldn’t achieve anything, and so I’ve been passed on to rheumatology. I’ll be seeing the specialist who diagnosed me with fibromyalgia, which cheered me up considerably because he’s such a lovely guy. The last thing I need is to be stuck with another po-faced consultant. I explained how the steroid treatment also helped a lot with the pain, to the point where it pretty much disappeared. We both agreed that fibromyalgia seems unlikely now; so I suppose it’s a case of finding out what it is yet again. I’ve been given drugs for arthritis to see if they help, and yet more steroid cream to treat the eczema; it’s come back. It came back once the steroid treatment dropped to two tablets a day, and the speed has been pretty distressing. One day I had a small red patch and I felt really smug that it seemed to have finally cleared up, the next I woke up with blisters all over my hands and feet. After a week, it’s pretty much back to the severity it was when I started the treatment, and I confess that I don’t hold out much hope for steroid cream working. They never have before. Still, if it helps the pain and itching at all, it’s a bonus. The past two nights have been pretty hellish, scratching and being kept awake by the burning.

I suppose I’m coping okay, otherwise. A few small panics, but I’m putting that down to frustration over the pain. I’ve developed a strange walk; I caught sight of myself in a mirror in Marks and Spencer yesterday and noticed that I’m not only dragging my right foot slightly (unattractive in itself) but I’m doing a strange thing with my hip – lifting it more on one side – thus making my backside look even bigger and, well, just making it look like I don’t know how to walk properly. It shouldn’t bother me because I can’t help it, but I really dislike showing any physical signs that I’m in pain. I don’t want sympathy or to be treated differently, but it’s becoming inevitable that I will be. I like being able to pretend that everything’s okay, but I can’t really do that anymore. Still haven’t used my walking stick; it almost feels like giving up, even though I know I probably need it. I told S about it, and I don’t know why but I said that it was a silly idea of my mum’s (it wasn’t) and I’m fine without it. Why did I lie? I hate lying, and I know he wouldn’t think any less of me. I just want to be… perfect, I suppose. I know there’s no such thing, but it’s hard to accept that life didn’t quite go the way I planned it to.

Speaking of S, on Tuesday it was a year since we started going out together. We didn’t see each other, but exchanged some lovely texts and he made me feel pretty special. I can’t quite believe that he’s put up with me for a whole year, and that during that time we haven’t had a single argument or even a bicker. I’ve never had a relationship like this, and I constantly have to mentally pinch myself to make sure it’s not a dream. I’m still slightly convinced that I’ll wake up one day in a padded room, having fabricated the whole thing. Love like this… it doesn’t happen to people like me. My relationships have always been about passion and fights and denial and jealousy. They’ve never been so peaceful and comfortable as my relationship with S has been. I’ve truly never known any man like him, and I feel pretty blessed. Sometimes I get scared that he’ll change his mind, but something inside me actually feels hope, for the first time since I can remember.

Next weekend, we’re going to Wales to stay in a cottage for a week with some friends. It’ll be the longest we’ve ever spent together, and I suppose in a way it’s a test of just how much we can take of each other’s company. I’m looking forward to it; usually I hate being around other people, but I feel quite comfortable with his friends and it’ll be nice to get away from these four walls.

We’ll be staying pretty close to the base of Mt Snowdon; a perfect opportunity to actually use my Nikon.

I confess; I slipped again. I didn’t purge like last time, but I’m sitting here with codeine running through my bloodstream. A normal dose, for once… but not a great sign. I just wish I could cope without some form of chemical help. Sometimes I worry I never will.

Edit: I’d like to thank the bloggers who have nominated me for awards recently. It hasn’t gone unnoticed or unappreciated, and when I’m feeling more up to it I’ll respond. Thank you for the nominations, it still amazes me that people even read this.

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  1. My dear friend. First, don’t ever worry about responding to my comments. I love hearing from you, but that is not why I stay in touch. I recognize the sleep all the time, or want to, very well. Too much sleep is the first sign that my depression has reared its ugly head once again. Good for you for forcing through it — that is the temporary answer, until the real thing comes along. Now, I understand that belief that you owe apologies to people for who you are, but please, try to stifle that. Maybe, instead, you could try saying how much help that person has been during the time when you really needed them. Or something. Or tell me to fuck off 8-) Enjoy Wales, and you and S will have a great time.


  2. Hi. Thank you so much for writing, even though you are feeling “apathetic”. I honestly appreciate it so much, and can relate to what you are saying. I also know how it is to be *that* tired. So tired that you just can’t feel anything, and it seems like you are just watching life in motion around you. I know that “normal” people very often do not understand what that is like. I hope that you get much rest and begin to start to feel connected again. In the mean time, do your best to honor your body and your spirit by treating yourself with love and respect. Thank you again.


      • I agree. I just wish sometimes that the people in my life could just get a very quick “taste” of what it is like. Of course I wouldn’t wish it upon anyone else, but it is just incredible to compare to the old me, and what I used to think were bad days. Now those are my good days! :( Do whatever you can to free your mind of this pressure to be more than what you can. I know it is so so hard. I feel all the time that I should be doing more or pushing harder, but the truth is we just have to do what we can do in that moment. The anxiety, stress, guilt, and pressure that we put on ourselves is just going to make us feel more drained, and adds to all of it. Sending a huge hug with this message, and just know that it is up AND down, which means the up will come again. Don’t give up.


  3. I understand so well about the apathy. I think I’ve been stuck in an apathetic state for the past few years. Yesterday I realized it’s been ages since I called up a friend and scheduled a time to get together. But did it get to me call? Nope. Not yet.

    Having a trip coming up is very exciting! I hope you are feeling well enough to enjoy every minute. And I hope you get the opportunity to take lots of pictures. Please share them! I’ve never been to Scotland but I feel very drawn to it.


  4. Welcome the Doctor’s Appointment Club where one appointment breeds `0 more. (I know you are a long standing member)

    I’m so sorry my friend that you are where I was a several months back. With fatigue.
    Chronic Fatigue is not like being tired.
    I know your description so well.
    One thing I have had to get is that I need to not beat myself up. That when I’m fatigued it’s something productive just “being” That I can ‘BE” is an accomplishment because as silly as it sounds it just takes so much damn effort. I know you know what I mean. Please try to remember that this shall pass. At least a reprieve between.
    The only person you owe a thing to is yourself. Seriously. I know it’s cliche-ish, but it will not work any other way. .

    Have I shared with you http://eitheory.com/

    If you feel like some “Light” reading. : +)

    Your WP will be here when you feel moved to reply back. We are going nowhere so take your time, be good & kind to yourself please~


  5. I saw so many doctors trying to find help with the pain I was starting to feel like a groupie. It took eleven or more years of hard work to find one that believed in me. I hung in there, often wanting to walk in front of a bus, but I did it, and found some level of help. You can do this! Keep writing it out and don’t give up.


    • My GP said it’s very unlikely I have fibro, given the amount of swelling I’m experiencing and the fact that steroids helped hugely with the pain. However, I need to see a specialist to confirm that. I’ve had feelings for a while that it’s not fibro – some things just don’t fit – and I’m hoping to finally get some answers. Apparently, arthritis often starts with muscle pain, which can be misdiagnosed as fibro, but then moves onto the joints, which is exactly what’s happened to me.


      • Thanks for replying. I just wanted to let you know a couple things. I gave up trying to find a “perfect” diagnosis. The amount of doctors apts, differing opinions….being subjected to all kinds of tests……enough was enough. I have some things that do NOT fit fibro…..like enzymes in my blood that show my muscles are weakening, and severe swelling (pitted/pitting edema). HOWEVER–the other disease that fit those…..the tests came back negative. I realized sometimes in medicine there is a gray area and it REALLY sucks being in a gray area. The diagnosis that most matched me was fibro. I no longer desire the need the have an exact diagnosis……I just try to manage my symptoms the best I can. I hope this helps you find some peace…….it did for me.


  6. I didn’t know you were misdiagnosed with Fibro. Sorry. Should a read this post first. I was misdiagnosed with Multiple Sclerosis and just got diagnosed with Dopamine Responsive Dystonia plus the Fibro. Glad you do have someone in your life who cares the way he should. Your blog is important to me. No matter what, please find the strength to keep writing. I will do the same.


  7. Another great post, love. Couldn’t relate more. It’s just been doctor after doctor, test after test. I was just recently diagnosed with Fibromyalgia…but I find it hard to believe considering I have actually joint pain and swelling. The rheumatologist I saw didn’t have an explanation for the swelling of course, either. Wishing you all the best, always. You jot down what you can, sweets. Don’t push yourself.


  8. Honestly, I am not a fan of doctors at all, and I try to avoid them when I can. It is possible that “someone your age” can have serious problems. I don’t know how old you are, but I’m going to guess that you’re relatively in my age group. I’m in my late 20’s, and I was diagnosed with high blood sugar and high cholesterol in my mid-20’s. The only reason I was tested at all was because of a strong family history. Otherwise, they would have let it go, despite the fact that my father had a quadruple bipass at 50. Women have a higher instance of mortality from heart problems, so it was imperative that I have this knowledge so that we can keep an eye on it.

    Most doctors are self-righteous, arrogant idiots. Seriously. But, that doesn’t mean that you can’t keep trying. You owe it to yourself and your health.


  9. Never feel bad about responding, etc, you do what you can, when you can, everyone here seems to be able and relate to each other in at least one way or another and you need to focus on YOU, we’ll always be here … xxx ♥


  10. I totally understand the apathy about writing. I set myself the aim of writing once a week this year. Totally failed in that, but I’m not entirely sure if I care…

    I’m glad your GP is understanding and also listens to you with any thoughts you have about your health and how to help it.

    Do you wear cotton gloves at night? That might be a good way to get the steroid cream into your hands at least, along with moisturisers to help/attempt keep the skin supple. (I’ve got ezcema but nothing like as badly as yours is, and gloves at night at least reduces the amount of damage my nails can do to my skin.)


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