Tag Archives: IBS

Hello, can you hear me, am I getting through to you….

31 Jan

It has been a rather mixed week for me. Amidst the euphoric feeling of reaching day 100 of using the Lightning Process and doing so much better thanks to it, I’ve also had a raft of symptoms rear their ugly heads. I’m not sure why. I have a few theories but I’m trying hard not to over analyse (I’ll let you be the judge of how successful I’m being on that front…)

Taking the Lightning Process approach, I think it’s my body’s way of giving me ‘feedback’ it’s trying to tell me something that perhaps so far hasn’t quite got through to me…, slow down we’ve still got work to do. Keep using the LP, use it more intensely again, don’t eat meat, take it more gently….And boy is it going to town with telling me. Enough already body. I’m listening, you’ve got my attention, I get ‘it’…though still figuring out exactly what ‘it’ is.

It all began on Monday when my digestive system decided to go on strike. Big bloated belly is me with very little to no action in the waste disposal department and all the abdo pain joys that goes along hand in hand. This carried on for a few days only gradually improving yesterday. Today I still resemble a mildly pregnant lady with my swollen tummy.

But that’s not the worst of it. Nope just the beginning in fact.

Day 100 of A Life I Love

Tuesday was day 100 of me using the Lightning Process- woohooooo! I celebrated by going for a lovely walk with my Mum in the crisp winter sunshine. We walked 2.54 miles! Woop! I’ve been managing that sort of distance a couple of times a week with no ill effects since Christmas. Yay me. That was Tuesday morning. Tuesday afternoon saw me doing increasingly tired, a sleepy hangover tired rather than ME/CFS hit brick wall crippling tired, and in bed with a bad headache. This is the first headache for which I’ve had to pull out the big guns (extra strength co-codamol and darkened bedroom at 4 in the afternoon) in a long time, weeks if not months – the lightning process and/or the trigger point physio I’m having really seems to be working a treat. After the big guns were released and some uber gentle yoga (cue Mum and Me in legs up the wall pose) my head cleared tho the tiredness remained.

A Funny Turn

Wednesday saw me driving to our local Westfield shopping centre (literally 10 minutes away, I love where we live!) and Mum and I doing a spot of shopping. We’d been there about an hour, a good proportion of which had been spent sat down whilst my Mum drank the biggest coffee in the Universe (the mug had two handles!), when I suddenly became incredibly hot and tired. Within seconds my legs and arms felt heavy and incredibly weak. I was light-headed and could feel my heart racing. My legs and arms were throbbing and my hands were visibly trembling. I felt so shakey and week. It was horrible.  Thank God Mum was with me. She steered me to the nearest seat, thankfully we were stood opposite a Costa coffee shop.With shaking arms I stuffed several fruit and nut quinoa cereal bars into my mouth along with gulps of fruit smoothie. This is sadly not my first ‘funny turn’, I know food usually helps but as with the last couple of times it has happened it took more food than it used to. I was still shaking and very white and my legs were throbbing. We put my legs up on a stool and gradually I felt the throbbing and heaviness subside and after about 30 minutes of sitting and several cups of green tea later I felt strong and stable enough to stand up. I was very close to tears during all this, not least because the ‘I thought I was better’ line and ‘why does this keep happening’  kept repeating in my head. Mum snapped me out of it ordering me to do the Lightning Process to calm myself down. Mum’s are always right aren’t they? I felt calmer and much less panicked after talking myself through the process.

Prior to doing the Lighting Process and taking back control of my body and my health these funny turns were a relatively regular occurrence for me; they were part of me doing ME/CFS and/or POTS. They had thankfully calmed down through the Autumn. But since Christmas they seem to be on the increase again. I had a similar incidence when I was out with Mr B just before New Years, once when I was at back at my parents’ last week and a couple of times after showering. The latter makes me think it’s something to do with orthostatic intolerance and standing up for too long. But yesterday I was wearing compression stockings which usually helps. My latest bloodwork  is better than my GP has ever seen from me so I’m at a bit of a loss as to what’s causing it which makes it pretty hard to prevent. My specialist is helpfully on holiday for the next month (probably on his yacht or at his house in Barbados, something tells me I pay him too much…) so instead I’ve contacted my physio, my dietician and my GP to see if anyone has any advice. Feel free to chip in if you have something that might help. Please!

I felt pretty dazed and a bit shakey for the rest of Wednesday and very tired. Yesterday, Thursday was better, no funny turns – yippee! But the myalgia and general achiness in my arms, neck and shoulders was far worse than it has been for months. My shoulders and collarbone particularly hurt. You may wonder how a collarbone (rest assured I didn’t bash or break it) can hurt, me too, but it did.

Chicken Tonight…errr No!

I have a burgeoning theory that this ‘bad’ week is possibly down to food; more precisely, down to chicken. That may sound crazy, maybe it is, I don’t know. I had chicken (a nice big breast baked in jamaican spices) on Sunday for the first time in 3 weeks. Since Christmas I’ve been eating a plant based diet and avoiding all meat, both red and white, as I suspect this will give me better energy and improved overall health. More on that in future posts. So I had chicken on Sunday and then everything has unravelled. It would seem logical and pretty obvious to tie the constipation and bloating to the chicken and probably the tiredness and the headache too – the toxins from the poorly digested meat in my gut could logically have caused that. But can it be that simple? Is my gut really at the heart of everything? To be honest I vehemently hope it is, because that would be a pretty easy thing to solve, bye bye chicken (Mr B trembles in horror!! Don’t worry my love I’ll still cook you meat…) But it almost seems too simple. And the funny turn? Given they’ve happened both when I’ve eaten meat and when I haven’t it would seem to me that that is something separate, but who knows. I’m going to try and trace a pattern through it all. But it’s kind like wading through waist high mud….

I perhaps shouldn’t be  complaining  focusing on the symptoms this week and instead be grateful that I have been relatively spared the pain and discomfort of ME/CFS in recent months thanks to using the Lightning Process. When I think of fellow spoonies still suffering 24/7 and compared to how I was when I was doing genius level ME/CFS I really have nothing to complain about.  And I am grateful for that. Honestly I am. But I’m also rather frustrated and flabbergasted. I want to know why, why God damn-it why?! If only my body could talk in actual words, then maybe I’d know what the heck was going on.

Until then, am I talking gibberish? Or does my chicken theory have legs? (hehe!)

Anyone experienced anything post Lightning Process symptom flares? How did you cope with it?

And if anyone can shed any light on the ‘funny turn’ in the absence of my specialist, then I’ll be forever in your debt 🙂

For now, yes body, I am listening to you, but could you send me an email with what you’re trying to say clearly typed please? I’m a lawyer, I like precision, enough already with these vague signs! Many thanks.

Health Update – September 2013

20 Sep

I can barely believe it is this time already. Today I have my three month review appointment with my ME/CFS specialist. It doesn’t seem two minutes since my last appointment back in June. So I’m going to take a break from the psych analysis of myself that I’ve been posting about recently and today post a general health update instead.

If you missed my psych posts you can read them here, here and here. And if you’d like to read my previous health update, June 2013, you can read that here.

A lot has happened in the last three months, I went on holiday to France and I’ve moved back to the flat I share with Mr B in London. Diving straight into the health update:

Question 1: How are you feeling?

  • Okay. I’ve had my fair share of ups and downs in the last few months.
  • July – had a few really bad weeks after my last appointment. Dizziness and lower leg pain significantly worse. Began using compression stockings. Racing/pounding heart very noticeable, especially after getting out of bath, when lay down to rest, after shower.
  • France – my ME/CFS did not seem to like my two week family holiday. My dear friend behaved herself for the first few days (subject to the obligatory post travel fatigue and pain spike) but then all hell broke loose. I had a lot of joint and muscle pain, especially in the mornings, I had to take co-codomal for the pain and spent the mornings curled up on the sofa unable to do anything else. Not sure why. I really didn’t physically over do it whilst there. But perhaps the heat, change of location and routine and effects of travel had a greater effect than I expected.
  • Flight – if my ME/CFS didn’t like the holiday well it damn well hated flying. The dizziness and pressure I felt both in my head and bearing down on my upper body during take off and landing was just awful. I was in tears. My lower legs throbbed and my ankles really hurt. Somersaults inside my head is a good description. It felt like the contents of my head lifted up….and then flopped back down. Repeatedly.
  • Bad Cold – shortly after returning from France I came down with a bad cold. Fever, sore throats, streaming nose, headaches. The Works. Viral cold symptoms passed in about 5 days but took couple of weeks to get back to my pre-cold ME/CFS levels.
  • Living back in London – I’m doing okay. My myalgia pain is worse both in terms of intensity and duration. Fatigue is worse too but not to the same extent as the pain. But I’m doing okay. Managing my illness better being here this time around compared to the few months I tried living back here last year, when I went dramatically down hill. I am trying to be strict with my body’s limits, resting lots and relying on Mr B and our cleaner to do housework and as many of the necessities of life as possible. I’m calmer, more relaxed and letting things go more easily which I think is helping a lot.

Question 2: What symptoms are most persistent right now?

  • Myalgia pain – I’m suffering much more pain than my ‘usual’. This has been the case for the last couple of months. In particular my neck and shoulders hurt more acutely and hurt everyday. The pain also seems to be spreading down my back. I notice a tightness and achiness in my neck, shoulders and and shoulder blades when sitting at the desk and on the sofa for too long, during and after standing for a short while e.g. when washing a few dishes and also when walking. Recently when I went for my paced walk (20 minutes currently) it hurt to keep upright, my neck, shoulders and back ached so much. I’m taking additional co-codamol painkillers on top of my daily dose of Amitriptyline several times a week at present for the pain, whereas before it was much less frequent. I guess it is because I am doing a bit more as I am no longer living at my parents.
  • Fatigue – although not as increased as the myalgia pain, my daily level of fatigue is a bit higher than it was. I find myself falling asleep when I rest more often and I feel generally more tired.
  • Lower leg pain – my calves and ankles throb and feel heavy. It feels like there is a band around my ankles pulling tight, squeezing the pressure in my ankles. This is particularly bad first thing in the mornings and both during and especially after walking. Wearing compression stockings (especially for my daily walk) and keeping my feet elevated helps alleviate this.
  • Red/purple feet – without the stockings I notice my feet turn dark red, almost purple. I notice this most often when I get out of the shower (when I’ve been standing up).
  • Sore throats – I am getting a more severe sore throat and more often. Especially, though not only, when I’ve been chatting on the phone or with a friend. Also when I’m tired and/or stressed e.g. when we had a giant water leak last week.
  • Dizziness – on standing up from having been sat or laid down I feel dizzy. This lasts a few moments. It feels like a rush of pressure to my head and everything goes black for a few seconds. It feels like the insides of my head lift up…and then flop back down. I reach out to hold onto something to steady myself. The compression stockings seem to help with this a bit. It is worse when I’m not wearing them.
  • Sound sensitivity – I really struggle to concentrate on the conversation when there is background noise e.g. talking with Mr B over dinner with music on. I feel stressed by the noise and its distraction.
  • Hair loss – every time I brush or wash my hair literally a handful of hair comes out. I can’t decide if this an actual medical problem or whether it is simply the result of having long fairly fine hair. My hair is longer than it’s ever been and the hair loss is worse than ever so I’m unsure.

Question 3: What symptoms are least persistent right now?

  • IBS symptoms seem, touch wood, to be much more under control – hope I haven’t jinxed myself by saying that! The high soluble fibre diet without any trigger foods has really helped. I’m still getting some bloating, but it’s much less frequent. I’m seeing a pattern to it as well – skins of fruits and veggies and nuts if they’re not chopped real fine, make me bloat. You can read more about my digestive improvements here.
  • Headaches – although most days I’ve still got the dull pressure above my left eyebrow which has me reaching for the tiger balm to clear the fuggyness in my forehead, I can only recall two really bad migraines in the last few months – hurrah! This is really great and a big improvement. I’ve still had bad headaches, just last week two consecutive days I had persistent head pain that I had to take co-codomal for, but  far few fewer and less severe. Hurrah!
  • Night sweats – until last night I had not had them for the last couple of months – double hurrah! Nothing worse than waking up drenched in sweat and covered in goosebumps and shivering all at the same time. Not sure what went wrong last night…
  • Sleep – as good as ever with melatonin. Getting 8 hours most nights. Often wake up feeling fairly alert though doesn’t last very long, quickly feel the tired hit me. Some mornings still feel totally un-refreshed but better than was.
  • Brain fog – have some times when I forget what I was going to say and when reading/concentrating is like wading through treacle but better than it has been.
  • My mood – I feel calmer, less stressed. I think being apart from Mr B when I was living back at my parents took more of a toll on my happiness than I perhaps realized. Being back in our flat in London together is wonderful, and still two months in, feels like a novelty. I’ve had a few down moments and been teary but overall I am happy 🙂  and much more balanced in my mood.

Question 4: Have you added any medications, supplements, treatments or “food” medicines?

  • I’m taking Acidopholus probiotic daily and digestive enzymes and peppermint capsules on an as needed basis. I take the enzymes when I eat meat and the peppermint capsules whenever I eat something I think could trigger bloating – broccoli for example.
  • I’m still taking organic acacia senegal soluble fibre twice daily as my digestive regulator!

Question 5: Have you subtracted any medications, supplements, treatments or “food” medicines?

  • I had a food intolerance IGg blood screening done in July which highlighted a number of trigger foods which I have cut out: grapes, yeast, eggs, animal milk, almonds, brazils, kiwi, coconut, turkey, soya. You can read more about my elimination diet and food intolerances here.
  • I haven’t as yet reintroduced my monthly B-12 injections.

Question 6: What have you been able to do since the last time we talked?

  • Move back to London to live with Mr B in our flat. I’ve been here for roughly two months and I’m still standing! Yes some symptoms are worse but overall I have coped well I think.
  • Flew to France for a two week holiday which was wonderful – you can look at some holiday pics here! Yes the flights were pretty awful for me and my symptoms and the second week of the holiday I suffered with a flare in myalgia pain and fatigue, but it was all worth it for a lovely family holiday.
  • Had friends over and asserted myself and took rests during their visits so as not to over do it too much. Tho still suffered the next day.
  • Baked – my restricted diet has led me down the vegan baking path and I love it! I’ve made several things from Oh She Glows and Chocolate Covered Katie recently – these two blogs are great for healthy treats and I highly recommend you check them out be it if you’re gluten free, vegan, both or neither!

Question 7: What do you think you need to work on?

Question 8: What are the 4 best things in your life right now?

  • Mr B – he has been amazing since I’ve been back living in our flat. He does so much around the flat so that I don’t have to do it enabling me to be here – he must really want me to be here! He does things (mostly!) without moaning when I ask and is just generally being super supportive. I couldn’t be here without him. Thank you gorgeous 🙂
  • My friends – I have had been able to have a few of my closest friends visit and I’ve been struck by what good friends these girls are. They’ve stuck by me through the last few years, kept in touch and made the trek to visit me. They’ve understood when I’ve needed to have a break from our chattering to rest and just generally made me feel really loved. Thank you girls 🙂
  • I’m really looking forward to next week when my Mum, Dad and I are going to Sussex for a few days by the seaside. Hopefully the British rain clouds will hold off for a few short, paced (of course) bracing walks on the beach. Not living at my Mum and Dad’s now I’m really looking forward to seeing and spending some time with them 🙂
  • My digestive system is playing ball and behaving itself on my diet without any of my trigger foods, without any processed or refined foods and everything in blended, poached, mashed baby food form! Seriously hope I don’t jinx myself having said that! It makes such a difference to my overall health and happiness when my gut behaves!

So there we have it, how I’m doing as at September 20th 2013. Wish me luck for my consultation and I’ll be sure to let you all know how it goes.

Mashed, puréed, blended or blitzed, give me baby food and my body is happy

11 Sep
Baby food all the way! Photo credit: monosodium via Morgue File

Baby food all the way! Photo credit: Morgue File

I thought it was about time I returned to the theme of my diet and food intolerances. I’m sure you’ve all missed hearing about the idiosyncrasies of my digestive system and bowels and been waiting with bated breath on the edge of your seats in anticipation….No? Oh that’s just in my head then.

This week I had my 2 month review appointment with my nutritionist. It gave me pause to stop and reflect on how things have been going since I cut out the long list of foods that the food intolerance tests showed I have issues with – it seems there are not many things in life, food or otherwise, that my little ME/CFS addled body does not have an issue with..grrrrrr.

And you know what? I have seen improvement. Whoooooo! Now I don’t mean that my abdomen is super flat and smooth (I wish…tho think that would involve a lot of gym visits as well as no trigger foods) and that my bowels are operating regularly without assistance. No, sadly miracles don’t happen. But I am getting far less bloated and far less frequently. And with the aid of the organic natural soluble fibre supplement acacia senegal I am seeing bowel activity most days! Those of you reading this who share my IBS and digestion woes (and I know there are a lot of you) will fully appreciate just how wonderful this is. I would even go as far as to say that I’m having toilet action nearly everyday!

I haven’t cheated and had any, not even a tiny bit, of my trigger foods AT ALL since I came back from France a month ago. And the only trigger food I had during my holiday was a couple of sips of wine (grapes and yeast are no nos for me) and a little garlic butter on a steak. So overall I am pretty darn pleased with how things are going diet wise. As well as my digestion improvements I think I have seen improvements in my ME/CFS symptoms as well – fewer bad headaches and slightly more manageable fatigue levels. The improvement in fatigue is negligible but I’ll take that! Any progress is better than no progress after all.

Water water water, how much do you drink? Photo credit Morgue File

Water water water, how much do you drink? Photo credit Morgue File

I have still had the odd times where my digestion has just seemingly gone on strike and I have bloated up to resemble a final trimester pregnant lady and had no toilet action.  But a pattern is beginning to emerge as to the cause.

My last day in France I had a steak that came with garlic butter melted all over it. The presence of dairy on my plate was not a good start but slowly I have realized that the hunk of red meat is not so good for me either. It wasn’t the best steak in the world and had been pretty near cremated (I’d asked for bien cuit – well done – knowing the French tendency to under cook meat but this chef was clearly used to cooking for tourists as bien cuit was tres tres tres bien cuit). It was very very chewy and took far too much of my limited energy just to chew and swallow. It made me realize that if it was that hard work on my jaw and teeth, imagine how hard it was on my poorly digestive system. I was very bloated for several days after, each time I ate, the food baby would grow. And worst of all, no pooping for 4 days. Urrrrggghhhhh indeed. I was incredibly fatigued that week with a real spike in my ME/CFS symptoms which was to be expected what with the effort of the travel home  but the red meat will not have helped and may well have been a significant contributing factor to my problems. Since then I’ve only eaten red meat twice and both times it was  home made very slow cooked tender lamb (a mild korma and a tagine) where the lamb literally melted in my mouth. And you wanna know the good news? Eating the lamb in this way seems to have been okay! No major bloating and no blockages in the poop department – yipppeeee!

Relaying all this to my nutritionist she asked me what blood group I was. Huh? I was a bit confused. Whilst I rummaged in my purse to find my NHS blood donor card which I new stated my blood type, my nutritionist explained that those of us with type A blood groups have far less stomach acid than the other blood groups. Less stomach acid means less fuel to break down food which leads to bloating, constipation and all the other lovely digestive problems that are such a part of my life. Ah Ha! I eventually located my donor card and guess what? Yep I am blood group A Negative. So I naturally have low stomach acid. Great. Makes sense. Low stomach acid is particularly problematic with heavy proteins as they take more to break down, hence my problem with the super charred steak. I was advised to take several digestive enzymes each time I ate steak and to save it for special occasions. Fine by me.

Now add to my already low levels of stomach acid the fact that I drink buckets of water each day and you get even lower acid levels meaning it is even harder for my body to break down food. Good okay. So I should drink less (I drink close to 3 litres of filtered water / herbal tea per day) . Yes well that’s easy to say. But I am constantly thirsty. And if I don’t drink when thirsty I get a horrendous headache. So yes I have the choice between low stomach acid and digestive problems or persistent thirst and headaches. Wow what a choice. The reason I am so thirsty is thanks to my lovely friend ME/CFS. Thanks to my nervous system being totally screwed and permanently stuck in stress mode my brain is constantly being signalled that I’m thirsty. Hence the gallons of water I get through each day.

So where does this all leave me then? Well avoid heavy cuts of meat like steak for a start. Stick with my soluble fibre focus to keep me regular.

Smoothies are good for my tummy! Photo source Morgue File

Smoothies are good for my tummy! Photo source Morgue File

Purée, mashed, poached, blended into smoothie or blitzed into juice, soup, slow cooked, soaked, de-seeded and de-skinned (yes I am the crazy lady peeling the cucumber and scooping out the tomato seeds). As Mr B says, give me a jar of baby food and I’ll be just fine…But hey, call me crazy, I don’t really care, cos it seems to be working. Fewer skins and seeds seem to be helping my digestive system to function that bit more smoothly. As a reminder of this yesterday I had 5 dates as a snack with my morning smoothie. My tummy was near enough instantly bloated, hard to touch and wasn’t happy for the rest of the day. Dates have quite tough skins….

I’m pondering a few more dietary things:

Raw v cooked fruit and veg – a raw salad leaves me feeling worse than steamed veg; eating an apple sends my tummy outwards in seconds whereas stewed apple does not.

Sugar. Sugar, sugar, sugar. If I eat ‘too much’ (by which I mean very little) refined sugar my fatigue increases. I noticed this with the granola bars and flapjacks I made this weekend for my friends coming over. The flapjacks were an overdose in golden syrup so yes naturally high in sugar and naturally bad for me. But the granola bars used light muscovado sugar. I keep reading about people who ‘quit sugar’ and felt so much better. But they cut all forms of sugar out of their diets, including fruit and high GI veggies. I think I need to detox a little from sugar. But I’m very wary about triggering detox symptoms as I do not need to trigger an ME/CFS flare, that’s the last thing I need to do. Cutting refined sugar out of my life isn’t hard as I don’t eat much of it anyway but for now I think I’ll keep the fruit in my life.

So for now I’ll keep pondering.

How are you doing with your diet? Do you notice an improvement in your health when you eat a certain way? What works for you? Whilst diet is inherently personal and what works for me may not work for you and vice versa but it’s always good to share. Information is power after all.

Must go, time for me to purée some bananas 🙂

If  you missed (what were you thinking?!) my previous posts about my diet and food intolerances, you can read them here, here and here.

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