Saturday, 27 May 2017

M.E. On: The Gallstone Journey

I haven't kept you updated on the (possible) gallstones thing like I promised, because I've not been able for blogging and I keep half writing M.E. On posts but never find the time or energy to finish them (there's so much I want to say though!). I'll go into more detail about what's been going on during this time, but this post will summarise the process and appointments I've been to since I was first referred for my ultrasound scan (which follows on from my last post on the subject).  I initially wrote this post a couple of weeks ago, but it's taken until today to finish, so I've edited a couple of dates and also added an update at the end.  myalgic encephalomyelitis banner
I did indeed wait just over 6 weeks for my ultrasound (story for another post). I worried a lot during this time. What if it isn't gallstones? What if it is, but it doesn't show up on the scan? What if they find nothing at all and after all these months, I just get sent home? What if they find something really sinister? It's just natural I suspect, to have all those thoughts flowing through your mind. Having gone through months of these 'mystery' attacks, I wished my life away to hurry that scan along! It eventually came and involved a good 10 minutes of contorting myself into strange positions, realising my boobs get in the way of everything (right on the bra line is where she needed to get into and it wasn't budging for anyone)! She wasn't particularly chatty, but did say she saw some small gallstones and that this would be passed onto my GP, who could then proceed to the next step. My GP had initially said wait a week before making an appointment with him, but I didn't see the point. We had a definite answer of what it was, so why not get the ball rolling?  Getting an appointment with my GP these days is like getting blood out of a stone, so there was a lot of faffing about and eventually (after popping out for breakfast and back again) we made a phone appointment with a random doctor (because that was all I could get). I'm struggling to get out of the house, so it's silly to physically go back to say "have you seen I've got gallstones? What next?", that could be done over the phone (especially as I was going to be waiting about 10 days for a face-to-face appointment, still with a random). I'm so pleased I chose this, because I was shattered after the scan. It must have been the awkward positions, but I was really sore for about a week afterwards and generally more tired.



Random doc gave me two options when he phoned. Do nothing/aim to control it by eating a low fat diet. I already am on a low fat diet and it's causing issues, so this didn't seem like a viable option for me. So the second option was to remove the gallbladder. A few people have said to me that they didn't realise gallbladder removal was the solution to gallstones. They thought the stones themselves could be removed and gallbladder kept, but I think they might be confusing it with kidney stones. Certainly the do nothing or remove the gallbladder are the only options I've ever heard anyone being offered. Random doc said my GP had noted I'd had several bad attacks and I added that in the wait for the scan, I'd had more, so I think he agreed it was best to get it seen to. He mentioned there was no infection/inflammation of the bile duct. He said he'd refer me to Ninewells in Dundee and I'd be notified of an appointment to meet with the surgeon. Sounded a bit scary, but I had no hesitation that this was the right choice for me. He said this wouldn't be quick (about 6 weeks), but considering the wait for the scan was apparently "quick" at 6 weeks, I was quite happy with that.

If I recall correctly, I've not had that many more attacks since then. Some, but not a lot. This makes me just as nervous as having one. We've had a lot going on at home (Easter, Mother's Day, 2 birthdays, Ruby wedding, a wedding) and this all involves cake and fun food! I've avoided as much as I could. Then had times where I have indulged and then you spend the rest of the day worrying you'll have an attack (they always come at night). Then you don't have one and you worry some more! Has it gone/corrected itself? Am I putting myself through a huge operation for nothing? If I can take a wee detour for a moment, I suffered random nose bleeds as a child/teenager. By my mid to late teens, they got really bad. I knew exactly what to do with them, but my blood wouldn't clot (even with the correct pinching) and stop. So I'd be bleeding for 2+ hours solid. I'd get sent home from school because I'd "lost too much blood" when really I was so accustomed to them, I was fine, but anyway I got referred to get something done about them. Cauterisation. Yep, it is as horrid as the word sounds (they stick something up your nose to burn/seal the bleed). I had my consultation and they weren't sure where the bleed was coming from as it had been a while since I'd had one, so next time it bled, I was to get taken in and cauterised afterwards. Hot rod up the nose, lovely! I never had another nose bleed again after that initial appointment! I have no idea why or how this happened. It just must've been a freaky coincidence that they stopped after being 'threatened' with a torture procedure! It does however worry me that the same thing could happen with the gallstones and now that I'm making the move to do something about it, it'll die down. That said, I haven't heard of anyone who has had bother and it's suddenly gone away on it's own. My attacks haven't stopped entirely anyway, it's just I feel like they are happening less often (or maybe it's just that I'm becoming used to them now and being super strict to avoid them as well, I don't know).

So I got a letter regarding my appointment a few days later, which was indeed for 6 weeks away. As a sidenote, I much prefer this method of knowing in advance. The scan people said they don't give out appointments too ahead of time as people don't turn up/forget, but I like to know they haven't forgotten about me and that something is happening rather than being left in the dark. So this was a couple of weeks ago and we made our way through to Dundee. I have lots of stories about this experience which I'll save for another day. However I will say, this appointment was very depressing. It felt like 'damned if you do and damned if you don't' from the outset and has played on my mind a lot since. I was eventually given the choice (kinda) of proceeding with the operation, which I chose and was then sent to get my pre-op assessment. Mum and I were a bit like "whoa, wait, already?" but they didn't have any appointments left for that day, so I had to go back in a fortnight.

That was last Tuesday (2nd may) and I was given a thorough examination. Again I have lots to tell but this was a much more pleasant experience (why am I saying that about needles and things?!), but I'll hopefully get round to telling you about it later. Obviously this has impacted greatly on my health. Having two big appointments so close to each other, when I've had so much else going on. My M.E. has been pretty much ignored (or certainly that's what it feels like), while we deal with this, but my M.E. is oblivious to this situation and I've been suffering a significant increase in symptoms. I think some people think that because you struggle to walk, you're fine if you're sitting in a wheelchair all day. However after about 30-40 minutes, I'm getting really sore and uncomfortable from sitting in that same position. After a few hours, it's really hurting and there's the fatigue too from staying awake and alert throughout the day. I'll be affected for weeks afterwards.  To top it all, the morning after this appointment, I got a phonceall from the hospital to say there had been an issue with my blood tests. Not something wrong with my blood, but something at their end, so I needed to go back for another blood test. It was Friday until someone was available to take me back across to Dundee and though we were out of the house most of the day, it only took 5 minutes in the hospital.

Since then, I've been really poorly. Last weekend (6th May), I felt really strange, not the usual aches and pains I'd feel after being out, but shivering whilst feeling hot to the touch. I was burning up but not sweating and the pain felt more flu-like to me. I've had pains in my head almost every day since and am battling to keep my eyes open, but trying not to sleep during the day as it affects my sleep at night. I could barely move from the physical side of things and anytime I've had to get up to do something (like get changed or wash my face), I've had to sit and recover for an hour or so afterwards. At times I've felt up to reading emails or posting on Instagram, then I get hit with another bout of exhaustion and have to immediately stop what I'm doing. This is probably TMI, but we are all buds here; I had my period during those hospital visits and it was really, really heavy, so I think the lack of blood (period and vials for blood tests) combined with all this activity has resulted in the weakness and sheer exhaustion and I need to give myself time to recover. Time I don't really have though, because like I say, the M.E. is in full swing but there are other things taking priority. It's tricky, because I'm forcing myself to go to these appointments, that I know I'm not really fit for, but there's no alternative if I want to be rid of the gallstone pain.

The pre-op assessment determines whether or not you are 'healthy' (Mum and I both laughed out loud at this) for the operation ahead, so if there's something that comes back in my blood work, I'll have to go back to get this seen to. The one thing we are thinking is low iron, which I've suffered from in the past. If you remember back then (2014?) I ended up getting iron infusions because the iron pills weren't doing a whole lot for me. I'd have to go to Dundee to get this done, which is worrying as it was a real struggle keeping up with appointments last time and they weren't far from my house. This would be a far bigger task, with all the travel involved. Again the M.E. is pushed back while something else takes priority and I know my Mum is really worrying that I'm not going to physically manage all that is asked of me. It's been a week though and I haven't heard back, so I'm hoping everything was OK and I can rest until my surgery date comes though. We asked for a guideline of when to expect that, but he wouldn't say. At the pre-op, they did say they hope to do it within 12 weeks (which is the guideline in Scotland for non-emergency operations), but it doesn't always happen. I could be called in if there's a last minute cancellation, but they said it might not even be that hospital (even further afield) which we said would be difficult as we don't have transport and I can't imagine how I'll shape up to travelling even further.

The flu-like symptoms are going and I'm sleeping better, so I'm feeling a little more confident that I'll make a full recovery soon. Oddly I've felt more like blogging in the past few weeks than I have for the past few months, but that isn't always reflected here. I know I've been really lax this year, but with everything else going on, it's just been too difficult. Today (27th May), I received a letter scheduling my surgery for next Friday! They phoned yesterday, right before the big Irregular Choice launch (I was like, I can't cope with all this at once!) and I'm pretty startled that it's so soon. I have to be there for 7am which will be fun (!) and my period is due the day before, so double fun!! I'm imagining lying naked, getting cut into with the crimson tide in full flow and where do my boobs go when they're doing all this btw? They get in the way of everything remember! Oh thank goodness I'll be unconscious, the indignity of it all!  I'm really hoping to get a good crack this week at finishing those other posts for you and scheduling them if I'm in hospital by then.  Please keep me in your prayers and thoughts (pooing myself if I'm honest)...well maybe don't think about that last paragraph, I'm blushing just typing it!

M.E. On are a continuing series of posts aimed at raising awareness of and detailing what it's like living with chronic illness (Myalgic Encephalomyelitis/M.E. or Chronic Fatigue Syndrome/CFS) through discussion of a variety of topics.  I was diagnosed in 2002 after contracting glandular fever earlier that year.  Unless otherwise stated, all opinions and experiences are my own.  If there's a specific topic you would like me to cover or you have any questions, please comment below and I'll do my best to address those in future blog posts.    

5 comments :

  1. I'm sorry you have this going on as well as the ME. I'm glad they're taking your gallbladder out, but I worry for you that the surgery will throw you into a flare up afterwards. Just be as kind to yourself as you can. xx

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  2. Oh my goodness Gem, this just sounds awful! I am so sorry you have to cope with this on top of your ME!xx

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  3. Hi.
    I'm not sure if you'd recognise me but I've finally started visiting your blong again<3
    I've been sick and busy → sicker lately.

    since you started posting about your personal experience of suffering M.E. sometimes I wonder if cause of my sickness is also M.E.
    many of symptoms sounds very familiar but none of doctors that I've met has ever mentioned about M.E. but obviously doctors are not always correct also M.E. isn't known well in my country as well and I don't know much of medical stuffs.so they rather call me either depressed or lazy or it's just 'body-type'.
    now it's afterwork to me and I don't have enough energy to read this post but I was reading your previous M.E. post that you posted after I stopped visting your blog at last night as I've been missing your blong past months.
    I'm going to read this and more of posts properly as soon as I'm able to but I just wanted say hi,also may have empathy from you.
    people,specially ones that are at my work would think of me a lazy,unmotivated,slow person.
    I was feeling dizzy and sick since I was small then finally found out that I had low blood pressure when I was middle of teen.many people had complained that I never could stay still or leaning on something while listening at school but I was feeling like throwing up and fainting all those moments.
    I also have problem with memorising,talking,listening.
    my head feels unclear,foggy,dizzy,sleepy.yawing,rash all the time and more and more and all I know is they are getting worse time after time.

    and now these past a month or more,I've got a lot of problem talking,listening,writing and memorising.
    my word gets stucked,I forget simple spelling (some most basic letters in my language which I never had chance to forget in my life).
    grammar is full of mess.
    forget something from less than a minute ago.

    and the worst of being sick is I'm not even able to do something I like or care.
    even if I try,I barely finish on halfway or something.and I even hate things on halfway!
    when I do something,I'd like to focus and do at least MY best.
    right now I'm do shoe reparing but I'm thinkig about quitting and switching to something more un-harm-able things since I'm too scared of ruining someone's shoe and I've noticed I actually don't care about formal male shoes or leather shoes with certificate or blahblah I only care about my kind of boots and high heels.
    it's actually hot there in my working place with machine and no real helpful air-conditioner,full of dust,piceces of shaved rubber and leather.
    sorry for grumbling as always.
    but there's not much of who understands my suffering.
    people around me always said I look energetic more than anybody else.
    I think it's because I smile or my face is naturally smiling but that's not really doing to me.
    none take serious about me feeling sick.even my family took years and finally started taking serious after seeing me really being ill,also crazy rash I had for serveral days this new year.
    but I'm still not in good treatment and I still got to work morning to night.
    I feel the too much weight of life of duty.

    can't wait to read more of you on next day off :3 I miss doing it a lot,I actually felt kind of relieve last night when I finally read you again after long while,but at the same time I've noticed that you've been writing less often lately so I know you've been sick too...I saw you on instagram,you've lost I lot of weight I guess.I see your legs for thinner as well through TSGD posts.
    you look good anyway but your health is what I'm worried about.
    also just read about your gallstone surgery,I really hope everything went well.
    and you know I really love your long hair<3I always wanted see you with long hair so looking forward to see how you style it and all that!
    I've been taking some medications for my stomach problems last few weeks but reading you helps more than that I believe : )
    now I got to hurry to go sleep for work tomorrow Dx

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    Replies
    1. sorry I've noticed that I wrote too much...also there's some typo I believe...</3

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    2. I started reading from "Life Right Now" since latest one I'd read was "Have You Tried?" and now I've finally finished reading this latest M.E. post about your gallstone journey.
      good or bad,I had to take some days off for past 2 days because of tenosynovitis.
      I know exactly what you mean about when your M.E. being pushed backed by something else taking the priority!
      and that's really true about getting used to with pain as well,
      as you said about who struggles to walk,would feel fine sitting in a wheelchair all day.
      I'm not so clear about how to say about it but,it's like you live by according to elimination when you suffering too much pain or any kind of situation that's bothering or limiting you...
      wish you the best always X

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