Saturday, 4 February 2017

M.E. On: Being Ill On Top Of Being Ill

I haven't updated you with a M.E. On post since last year and there's many reasons for that. I have a half written post regarding the outcome of the scary meeting, which I can't quite finish and honestly have had so much on, I haven't had time. It's hard to write and my feelings regarding it, still aren't straight in my head, so it's difficult to explain to you, when I'm still unsure about the whole thing myself. Instead today I wanted to talk about being ill when you're already ill. I could make it short by saying "it sucks" because that sums it up frankly!

Over Christmas everyone in my house had a cold of some sort. It was most definitely "going about" and I was hoping I wouldn't catch it. I did and actually mine turned out to be the flu, which was even worse. Obviously with M.E. I have symptoms every single day, which are actually quite flu-like (the aches and weakness and tiredness), so when you get another dose on top of that, it's hell. I had to totally take time-out (and actually enjoyed doing absolutely nothing) and it took a good 2-3 to recover fully. I had the shivering body while boiling hot, absolutely aching, coughing and I slept a lot. I had to go 12 days without showering, because my body wasn't up to doing it. None of it was pleasant, so I was glad to be rid. On top of this though (because y'know I need something else to go wrong), I've been taking funny turns. I spoke about the first one a while back, you may remember. It happened in November last year. My parents had been away for a few days and Mum brought me back the most adorable unicorn cupcakes from Selfridges. I ate one that evening, then a short while later was in agony. Stomach pain like nothing I've felt before. We joked it was the cake! It moved up towards my chest, I was struggling for breath because it felt like someone was pressing down on my chest and I was crying out in pain, which is major considering the pain I go through on a daily basis. I came over hot, thought I was going to be sick and could not get comfortable or ease the pain no matter how I sat, lay or stood. It's the most uncomfortable thing to watch, as I'm flailing about all over the place and groaning and nobody can do anything to help. My family made the decision to call an ambulance and I didn't stop them. I knew it wasn't normal for me to feel like this and I felt like something was about to rupture inside, it just escalated to the point I thought I might explode. MYALGIC ENCEPHALOMYELITIS banner

The paramedics were great, totally put me at ease, especially after the call operator gave a strong indication she thought I was having a heart attack (nothing like telling you that, to give you one!), though apparently this is a good thing as they respond super quick. After writhing around in agony for over an hour, the pain eased practically as soon as the paramedics walked through the door. I felt like such a fraud. I apologised to them, to my family for worrying them, but everyone said I did the right thing and they waited until it had completely passed before leaving and told us to phone if it happened again. The upshot was they thought it might be heartburn and caused by my medication (Diclofenac) which is known to cause stomach problems (when taken for a long period). I've been on it for years and take Omeprazole to counteract that. They suggested I see my doctor and either get something else to line my stomach or change my pain medication. I've thought I've experienced mild heartburn before, but if this is what proper heartburn feels like, man is it killer! I remember my sister having it bad when she was pregnant with one of my nephews, but I just couldn't imagine that this was what people who suffer from indigestion go through, it was an excruciating pain with absolutely no relief. I was shattered for days afterwards, it really took it out of me. So I had to make a phone appointment with my doctor as I wouldn't have been fit to get out of the house. He didn't seem too concerned, maybe I didn't highlight how serious the pain was, though he knew it was the first time I've ever needed an ambulance. He put it down to being a one-off but said if it happened again, we'd look at changing things, but as it stood I was taking something to line my stomach so it shouldn't be an issue.  I have to add, all these years, I've never had any stomach problems and we only started the Omeprazole as a safety measure, not because I felt I needed it.

3-4 weeks later, it happened again. Just an ordinary Saturday night watching the X-Factor and I felt it coming on, but didn't panic and then it escalated. It didn't quite get as bad as the first time and because I'd been through it before and knew I wasn't going to explode, I decided to just ride it out. I was still in severe pain, but felt there was nothing anyone could've done to help, so no point phoning an ambulance again. My Mum says my gravestone will read "died, not wanting to bother anyone"!  Both happened on a Saturday, so this got me thinking it was something I'd eaten. I tend to 'treat' myself at the weekend, but never usually to the point of being so full I feel sick. Just the odd bar of chocolate or cake. Over Christmas, I went to bed one night feeling like my tummy hurt (and obviously had eaten more than I usually would), but hoped it wouldn't turn into anything and I was so tired, I just wanted to sleep. At 3am I was wakened with the most intense stomach pains. I was doubled over, like my body did this by itself, not my doing. It was agony. I couldn't straighten my body, but made it through into the spare room where we have a sofa and tried to prop myself up with cushions, because I recalled the paramedics saying it was best to sit straight rather than lie down. I was in so much pain and so tired and uncomfortable that I couldn't fall asleep (sitting up!) nor amuse myself by doing anything (took too much energy). Once more the pain was so bad, I felt nauseous. All this walking between rooms was really taking it out of me (not that we live in a mansion, but with the M.E. I struggle to walk around), but I knelt on the cold bathroom tiles, leaning, half sleeping actually, over the toilet, honestly hoping to be sick, because I thought I'd feel better (and I really, really hate being sick). It never happened, so up I got and plodded back through to the spare room. I didn't want to phone downstairs to my Mum or tell my sister as once more I felt they'd just have to watch me and my sister had been so upset the first time it happened. By 6am, it was easing enough for me to make it back through to my bedroom and I propped myself up with three pillows and tried to sleep. I didn't feel the pain properly ease until around 9am though and didn't get much sleep. Of course the next morning, my family were furious that I didn't alert them. We still hadn't bought Gaviscon as per the paramedics suggestion, so I was insistent we get some (I'm never out and Mum had just never got round to it), though for me this third time felt different. The pain stayed in my stomach and also my lower back, which I struggle with anyway, but the pain was so intense it went right through me. It didn't travel up towards my chest as it had previously and this being doubled over thing was new too. Neither time before lasted as long as this either.

Obviously the time of year wasn't ideal, but I made an appointment (in person) for as soon as I could with the doctor, which wasn't until the 19th of January. He was much more concerned this time (the upside of seeing him in person) and agreed it was time to change my medication or I was headed for a stomach ulcer. It's pretty rotten that the pills to help manage pain, hurt something else, for which you take another pill...weird system, but the way it is. You practically had to scrape me off the ceiling after we left as we totally changed my routine. No more Diclofenac (3 times a day) and of course no Omeprazole (once a day) either. I'd already stopped the Vitamin D (4 a day) in the summer as I felt it wasn't doing me any good and I really disliked taking them (and it was a great inconvenience). So I'd gone from around 15 pills a day to 7. This pleases me no end! Instead I was to use Ibuprofen gel. The jury is still out on this one (my arms hurt from applying it, it leaves white residue all over my body which looks gross, was making my hands peel (even after washing them) and I have to remove my clothes which is tiring).

Anyway 2 days later I have another episode. I was getting ready for bed and felt my stomach sore, but it didn't feel too bad. On the off-chance it was going to get worse, I took 2 Rennies, which I've had sitting next to my bed in case of emergency! Again I didn't panic, but just tried to go about my usual routine, cleaning my teeth, flossing, washing my face etc. I always sit down to brush my teeth, but I was thrust forward sometimes with the pain, so I told my sister. We sat in the spare room for a little bit, but it intensified and she phoned down to Mum. Again it was my lower back along with my stomach and if I remember correctly my chest too. It feels like all your insides are tensing up, but at the same time you have that bloated/exploding feeling and it can take your breath away as the pain intensifies and you re so focused on that, you can't breathe too!  I felt sick again, actually tried to cough it up, but nothing came out. This went on for a good few hours, with my Mum holding my hand and even once I went to bed, it hadn't gone completely, but I was absolutely exhausted. I take medication to help me sleep, so I get really drowsy for a period (and if you don't take advantage of sleeping during this window, you're then wide awake after it wears off). I felt absolutely terrible for my Mum and sister, they felt so helpless and I just couldn't get comfortable, all the while my head rolling around as I nearly fell asleep! I was particularly gutted after my appointment and the big change-up in meds, only to find I was still taking funny turns and perhaps that wasn't the culprit. It makes me want to stop taking everything. Again we looked at what I'd eaten (it was a Saturday night once more) and outside of my regular meals, I'd had a small piece of cake. I'm not one for eating a lot or anything spicy, so it seemed unlikely to be food related, but by now I was pretty much afraid to eat anything as I didn't know what would set it off. When my nephews were here over Christmas, they were making fun of me for saying I needed to sit a while before playing with them, cue "have you digested yet?" questions every minute! I've been really conscious of eating slowly and not eating too much.

The Monday after, Mum phoned the doctor and set up a phone appointment, which the earliest was Wednesday (last week). I'd stopped using the Ibuprofen gel in the meantime (I'd read that one of the side-effects was stomach pains, which bamboozled me as the only reason I was trying this was to get away from that, but anyway), the doctor said that was unlikely and that I could use it again, but he'd set up an appointment for an ultrasound scan, so we could see what's what. He said it would come through quickly and thankfully they could do it locally, as obviously getting me to a bigger hospital like Dundee, is a big trek for me in this condition. He suspected it might be gallstones.  So we've been waiting for that appointment and on Tuesday (this week) it was Dad's birthday. Mum had bought doughnuts the day before and I refused one, worried it would make me ill. On his birthday though, she was like "you'll manage a wee bit of cake won't you?", I felt like I could (I'd not had anything like it all week) and there was no fresh cream or butter cream icing or anything, so I thought I'd be alright. This was early in the evening, but by around 11.30pm I felt a slight uncomfortable thing going on in my tummy. I didn't say anything as I didn't want anyone to panic. By midnight it was getting worse and I said something. I still naively thought it wouldn't escalate, but it did. It felt like a stitch, but going across the whole stomach, not just at one side.  Seeing as the Rennies had zero effect last time, I tried the Gaviscon liquid this time (the tablets were like sucking dry toothpaste, this was like drinking toothpaste mixed with milk, lovely!). Man, did I curse that birthday cake! Mum felt awful for giving me it, I felt devastated I was allergic to cake (!), my sister (the greedy guts, though she's tiny) prayed she never caught what I had or her life would be over! Mum had made me a hot water bottle and by about half 2, I felt able to move and go to bed. It was really bad at times, but thankfully because I hadn't yet taken my pills, I wasn't sleepy, so didn't have that to battle with too. I just keep feeling so guilty for keeping everyone up and worrying them (my sister had work that day), but it always seems to present at night. Every other time, I've still stayed in good spirits while all this was going on. I've managed the odd joke, but this time I'd just had enough. I was feeling a bit sorry for myself, worrying about going into hospital, getting an operation to remove my gallbladder and that knowing me I'd be the however small percent of people that something goes wrong or they do it and it has no effect or something, because that's pretty much my track record to date! I couldn't understand as well, if cake was the trigger, why it hadn't triggered at other times when I'd eaten it. So I just felt very unnerved by the whole thing and like I didn't have time to be ill on top of being ill. 

Mum phoned the doctor again on Wednesday to try and hurry along this appointment and to let him know it happened again. I swore off eating cake ever again. As a sidenote, it's amazing how quickly you can lose interest in food when it could be hurting you like this. Gallstones are apparently more common in women who have had children (not me), older women (not me) and obese women (I've now lost 3 stone in the past year, so I'm trying not to be!).  The receptionist said the referral for the scan had been made, but she had no idea how long it would take. Every day I'm waiting for the postie with what I hope to be an appointment, but nope, nothing. I know it's only been 1-2 weeks, but it's worrying when it's been ongoing since November, you just want it dealt with. Which brings me up to last night, when it happened again! I mentioned it, but said I doubt it would come to anything (hadn't eaten any cake!!) and went off to bed. Once I got upstairs, I sent my sister back down for Gaviscon (even although I don't think it's had any effect before, which makes me think it definitely isn't heartburn) as it was getting worse. We sat in the spare room for about an hour and tried to take my mind off it by playing games on my phone, but my back was getting worse than my stomach this time. I had a hot water bottle, so sat with that, sometimes on my front, sometimes on my back. The pain didn't really lessen, but the pills were kicking in so I was feeling tired, so said we should just get ready for bed and hope it went away. It didn't, it just got worse. I felt this time I was able to lie down, but all across my lower back, it was like it had seized up. A kind of burning, excruciating pain that nobody should feel. I tried every position, even on all-fours balancing the hot water bottle on my back, but it just wouldn't go away. I felt bloated, like I needed to pee so went to the bathroom, but it didn't ease. I went and told my sister, but said I'd just go back to bed because I was so exhausted I had to try and sleep. Maybe 10-15 minutes later I phoned her to come along and to get Mum. I honestly would've been so grateful if someone had clobbered me over the head and knocked me out. I wanted to not feel the pain any more, soooo badly. My back was the worst, but sometimes I felt it easing a little and my stomach would start up or vice versa. I ate nothing yesterday that could trigger it, so my cake theory went out the window. Of course then I google it and the first thing is pancreatic cancer and I'm thinking the worst!

I don't know what it is, but it's definitely something. Nobody should be in that much pain for no reason. I'm now terrified of everything, not knowing what will set it off and when. I'm also confused as to why it's not a constant pain, why would it only occur every few weeks? We've been trying to look for a pattern (not found one), but whatever it is, it seems to have accelerated now, happening 3 times in a couple of weeks, which is obviously a concern. No appointment arrived today, so it'll be another phone call on Monday to the doctor. It's this waiting over the weekend, then having to wait for an appointment, it's dragging on and my worry is if it is something serious, it's needing to be dealt with now, the sooner the better. No good can come from waiting and obviously it's a worry.  I try not to stress about it, but I know this is abnormal for me and that there's something.  I think if it happens again, we'll have to phone an ambulance and I'll let them take me to hospital where I'll be able to get a scan and properly looked at, because this can't go on. I was almost at the point of phoning again last night and thank goodness nobody owns a gun, because I just wanted put out of my misery! The odd thing is a day or two later, you feel fine and it seems weird to think you wanted to die because you were in so much pain.  It's really that extreme though.  Anyway, I wanted to keep you all updated, because although when I'm feeling able for it, I'm throwing myself into the blog as a distraction, there are times I might just disappear without warning or when I'm not feeling like myself. The M.E. is constant, so I'm battling that alongside whatever this is and it's really taking it out of me.  I will keep you in the loop when I find out more, but for now, I have no words of wisdom or positive note to end on, sorry!

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.) 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.    


  1. OMG! I'm so sorry you had to go through all this on top of everything you already have to deal with! I want to tell you the experience I had, which was somewhat similar to yours, although my pain wasn't quite so severe. It all started with food poisoning on September 21, 2016. I had all the symptoms of food poisoning, and they lasted a few days. I decided to be on a bland diet for a week so my body could recover. On September 29 I thought I had given myself enough time and started eating normal again, only to have a second episode of food poisoning. This time the symptoms didn't go away, though, despite me being again on a bland diet (I ate only chicken and rice with no seasonings plus fruits and drank only water). I also drastically cut the amount I ate daily to about 1/3 of what I normally eat. I just wasn't hungry and like you said, it's amazing how quickly you loose interest in food when it's making you sick. Anyway, after a few weeks having food poisoning symptoms, I decided to see a gastroenterologist. Over the course of a couple of months I did every possible exam there is regarding the digestive system (endoscopy, colonoscopy, CT scan, a number of blood works) and the results always came back negative (thankfully), however I was still having food poisoning symptoms whenever I tried eating anything besides my bland chicken/rice/fruits/water diet. I would feel stomach pain to be point of doubling over, I would feel bloated, have a lot of gas, it was just awful. So I stick to my diet and kept eating very little. I lost weight (20 pounds in two months) and my doctor started to worry about the lack of nutrients. Having not found anything wrong with me, his diagnosis was that the food poisoning have me gastroenteritis (which was long gone by the time I went to see him), and the gastroenteritis gave me IBS (irritable bowel syndrome), which is something that cannot be detected in any exam. He said IBS has no cure, varies greatly from people to people, and that the symptoms can last days, weeks, years or can never really go away. But he wanted me to start on another kind of diet and follow that for a month, then, if I wasn't feeling ill, I should start introducing a new food one at a time and see if that would give me symptoms. If not, I should keep eating that and add something else. It's now February and after being on the doctor's diet for two months instead of one because I was scared to try something and be ill again, I'm happy to tell you that I am slowly getting back to normal. I lost 30 pounds since September, my diet changed a lot, but I am now able to eat things that made me ill before without side effects. However, I have decided to cut some things permanently off my diet (chocolate, bread, pasta) and decided to drastically cut the amount of sugar I eat because I'm very, very happy with the weight loss. I have a check-up consult with the doctor in a couple of weeks but I haven't had symptoms in a long time. I'm hopeful they won't come back! Anyway, I wanted to share my experience with you because the symptoms you're having seem similar to mine. I can email you the doctor's diet, if you like, just let me know. I wish you all the best! Hang in there!

  2. Hey Gemma - I'm not really sure what to say because I can't even begin to imagine how horrendous this is for you. I'm glad your doctor is listening and definitely agree that you should phone an ambulance next time. You probably don't agree, but I think you're dealing with this incredibly brilliantly, xxx

  3. That sounds terrible! It sounds an awful lot like when I had gallstones - which feels very similar to a heart attack/indigestion. I had to go to hospital via an ambulance a couple of times before I had mine removed, I even banged my head against the toilet bowl in an attempt to knock me out.

  4. I wish you weren't going through this...I'm speechless in a way.

    I know you can't paint a perfect picture, but you seem like you're handling this better than the average person, usually people who suffers with illness like you do tend to be miserable and never smile, you're smiling and seem to be positive even though I know its hard to stay positive when dealing with everything you're going through.

    Everything will get better soon, continue being you. ❤❤❤❤❤

  5. Oh my days Gemma, this sounds unbearable! I hope the scan comes through soon and you have an answer. I know gall bladder problems affect overweight people, people who don't eat meals at regular intervals, or people who've lost a lot of weight quickly. I'm really hoping you get a quick diagnosis whatever it is. xx

  6. Hello, I've never commented on one of your posts though I avidly read them and fret for you! I just felt I had to offer you some support, you must be so tired of all this shit and I'm so sorry this is happening to you. I do wonder if it's IBS? I have IBS and I have had instances where the pain has been so intense I thought something was seriously seriously wrong, I hadn't even associated the pain with my IBS at the time, I'd simply though I was dying (no joke!). It eased off as soon as I was on the phone to 111 (typical) and I was left feeling like a hypochondriac. Similar instances have happened before with seemingly no explanation and no pattern and when I spoke to my GP she suggested it was my IBS and I found taking Buscopan really helped. You could try it while you wait for your appointment to come through? Another thing, you mentioned your doctor stopped your diclofenac and changed to ibuprofen gel which you're struggling to apply. Have you tried a diclofenac suppository? I don't know if physically you'd manage to insert one but it might be less hassle than striping off to labouriously apply gel? Also they last 12 hours so once you've inserted it your pain is hopefully managed a little, for those hours. I'm not a doctor, BUT these have things that have helped me and obviously I can only speak anecdotely. Whatever it is, whatever is wrong, I sincerely hope that it gets diagnosed and treated ASAP. I am thinking of you, as are a million other blog readers, and I am sending you so so many hugs and positive thoughts. Michaela Xxx

  7. Oh Gem, I'm so sorry! I'm also so sorry I am only reading this now! I've not really caught up with blogs this week so much. This is absolutely terrible. I do hope that your Doctor can diagnose it and I will pray that it is nothing sinister. I know how it is to have it preying on your mind that you mind have something awful (I had that with my breast lump a few years ago and now a lumpy mole that has grown, changed colour and has itched and hurt a bit recently).
    I truly hope and pray it is nothing too bad. You have put up with so much and it isn't fair. It really isn't. Is there anything I can do???xxx

  8. I'm so sorry to hear about these pains, Gemma, although I'm also nodding along with you as it sounds so familiar. I've had awful stomach pains, competely at random and with no pattern, on and off for years. Have had ultrasounds, endoscopy tests and so many different pills (inc Opramazole), which don't seem to have had any affect and have just been told it's "IBS" and there is no cure. Which is frustrating. I definitely relate to what you say about losing interest in food; it's certainly had a huge part in what was already a pretty messed up relationship with food as well.


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