The Horror of Cold Turkey

27 Nov
My Daily Dose of Medication.  © Jess Bruce 2014.

My Daily Dose of Medication. © Jess Bruce 2014.

Today being Thanksgiving in the United States, you may think from my title that I’m going to write about what to do with all that leftover turkey following the big meal itself. I’m afraid if you’ve come to my blog today to find out how to make that amazing turkey curry or holiday sandwich, then you’re going to be disappointed. For all those on medication and itching to stop taking them, read on…

Today I’m actually going to talk about coming off one of my ME/CFS medications. As mentioned in my post about my progress this year, my recovery has not all been plain sailing. There have been some bumps and set backs. And coming off Cipralex was definitely bumpy.

First a little background. My ME/CFS consultant prescribed Cipralex for me 3 years ago. It is a medication that can reduce anxiety and moderate stress responses. ME/CFS being a neurological condition severely inflamed by stress, it was a logical medication for me. I was on a fairly low dose of 20 mg daily. With hindsight I can clearly see how much this drug was helping.

As 2014 has gone on, I have increasingly itched to come off all my medication (Cipralex aside, I’m still on Amitriptyline, Levothyroxine, Melatonin and Fludrocortisone plus a whole load of vitamins and supplements) in order to see how well I actually am now. But my intention was always to do it in a moderated, gradual way under the guidance of my doctors.

However, events beyond my or my doctors’ control conspired against me and in August I stopped taking my daily dose of Cipralex cold turkey. No gradual wind down over weeks as is recommended, in my eyes (and I hasten to add my consultant agreed) I had no choice.

Mid August I collected my monthly supply of meds from my GP. Instead of there being the familiar white box with the blue line and Cipralex written in red type, there was a turquoise green box labelled Escitalopram. I googled and discovered Escitalopram is the active ingredient in Cipralex. So I thought nothing of it and started taking it.

I thought nothing of this change in medication for over a week. Despite the week being one of the worst I’ve had all year. My bloated belly reappeared. I was back to barely being able to see my toes and looking like I were pregnant. My digestive system it seemed was on vacation and stopped sending waste out the garbage chute. Then came the exhaustion and fatigue. I had the first severe migraine that I’d had in months. I was pale, lethargic, teary, achy and generally felt like ME/CFS had firmly moved back in. After a week of this and questioning every food I’d eaten trying to elicit the cause of this downturn the penny finally dropped. The only thing that was different to the week before when I had been my usual, post Lightning Process self, was that turquoise box. The only thing that was different was the switch from Cipralex to Escitalopram. The active ingredient may be the same but other ingredients across the two brands are different.

I went to my GP immediately but they said unless there was a clinical reason they could not switch me back to Cipralex. The PCT (local medical governing body) had decreed that Cipralex was too expensive and therefore Escitalopram was the medication to be used. Apparently not properly pooping for 10 days does not count as a clinical reason. Really?! They helpfully suggested they could prescribe me another medicine (Fybrogel) to help get things moving. Fybrogel and I had already met and not got on well. That nasty concoction had me vomiting into my University toilet right back in the early days of my IBS diagnosis. It seemed idiotic that for cost saving they couldn’t give me the one drug I wanted but could give me an additional drug to try to resolve the mess another drug had caused. Yes give me two drugs when one would have been enough…totally logical. And people wonder why the NHS is broke. I politely declined the Fybrogel (or rather my Mum angrily refused on my behalf because by this point I had no energy left with which to argue my own case) and took matters into my own hands.

Literally my own hands, given my consultant was out of the country and unreachable. And so I stopped taking the Escitalopram and my calm journey with Cipralex came to an abrupt end. The good news is that literally within a matter of a few days, my body began functioning normally again. I started being a regular toilet visitor once more, my belly debloated, the fatigue and myalgia lifted. All was going swimmingly. For a few days at least.

And then came the real fun. The withdrawal side effects kicked in and kicked in hard. Nausea, dizziness and diarrhea (ah yes the irony) became my new companions along with worsened fatigue, hot flashes and mood swings. Leaving aside the emotional mess for a moment, everything I usually loved to eat made me nauseous.  Green smoothies yuck. Rice milk porridge double yuck. Vegetables eurrrrgh. Even dark chocolate turned my stomach. All I wanted was carbs. Ready salted crisps, jacket potatoes, poppadoms and white rice became my new favourite things.  And meat. I craved meat. Namely bacon. Ginger tea and ginger (gluten free) biscuits were my saviors. This went on for about a month. The upshots being I lost some weight (score) and according to my pregnant friend I had a good trial run of what the first few months of pregnancy is like.

Whilst the hot flashes, urgent need to run to the toilet a hundred times a day, nausea and lack of appetite were horrible, the emotional roller coaster was so much worse. It was bad for me but for my parents, sister and especially Mr B (being my constant companion on the ride) it wasn’t pretty either. It was very up and down with way more downs than ups. One minute I’d be upbeat and seemingly calm and balanced, the next I’d be stressed and angry and then the next I’d be crying uncontrollably. After an angry outburst at a loved one, I’d then burst into tears hating myself for behaving in such a way. As I say, a rollercoaster. Mr B summed it up nicely, ‘my fuse was a lot shorter’ than usual. Every little thing tipped me over the edge and I felt perpetually wired. My mind a constant whirling mess.

Thankfully 3 months on from when I went cold turkey and stopped Cipralex and Escitalopram, things are much improved. The physical symptoms are all but gone and although I’m not as calm as I was on the Cipralex and I’m having to work harder at keeping myself balanced, things are much improved. Thank God.

When I did finally get to discuss all this with my consultant he was really supportive and said he fully understood why I had stopped taking the Escitalopram. He was angry that my GP had put me in that position. ME/CFS is an illness that increases your sensitivity to everything (hence food intolerance, light and sound intolerance etc) including reactions to drugs. My consultant gave me a private prescription for Cipralex but at £45 a month it wasn’t ideal. And having put my body through all the side effects I am not keen to restart taking it again. My consultant warned me that if I am having to really focus on controlling my emotions then this could end up using too much of my precious energy causing my fatigue to spike. It’s a balancing act and  I am seeing how I go.

So the moral of the story is always always gradually come off medication. I would not advise you go cold turkey especially with an illness such as ME/CFS. My consultant said it was testament to how far recovered I am that this whole episode did not send me flying backwards into a major ME/CFS relapse. Always always seek medical advice in relation to medication. But I would say, balance that with listening to your body and stand your ground if necessary.

The horror of medicine induced cold turkey aside, if you’re celebrating Thanksgiving today, may I wish you all a very happy day and of course, make the most of those leftovers!

As always, my posts are simply an account of my own personal experience and are not intended as medical advice. If you choose to follow any of the information I present, please do take medical advice before doing so as I cannot, and do not, take responsibility nor accept liability for any ensuing loss, damage, consequence or situation.

A Walk in the Park

24 Nov
Houseboats on the canal © Jess Bruce 2014

Houseboats on the canal
© Jess Bruce 2014

With the title of this post ‘a walk in the park’ I am not referring to ME/CFS recovery. As we all know by now, a chronic illness is anything but a walk in the park.

No, the meaning behind the title for this post is much more literal. Today I’m going to write about an actual walk in an actual park. Namely Victoria Park, a gorgeous green space close to my home in East London.

Autumn leaves © Jess Bruce 2014

Autumn leaves © Jess Bruce 2014

Walking has been a big part of my life with ME/CFS. After an initial time, back in December 2010 and January 2011, of being too ill to move anywhere other than from bed to sofa and back to bed, I have walked most days. When I was too poorly to partake in more active pursuits, walking I could still (mostly) do. It has become a good barometer of how my recovery is going. At the beginning I could only manage a few minutes; a few steps up the street. From that feeble starting point, I built it up. Walking was a key part of my paced activity programme, increasing the time I spent walking in minute incremental increases of literally 1 or 2 minutes. I built it up gradually, oh so gradually, until at my strongest pre Lightning Process, I was able to manage 25 minutes of walking without suffering severe post exertion malaise. There were ups and downs and fluctuations in my walking ability went hand in hand with relapses and set backs that are the bread and butter it seems of having ME/CFS. Before I got sick with ME/CFS walking was purely a mode of transport. It got me to and from the train station. I didn’t see it as exercise. It didn’t push me enough. Running on the gym treadmill, pushing myself as hard as I possibly could was more my cup of tea (that is not to say I was a gym bunny though! I went sporadically).

Autumn trees reflected in the still lake. © Jess Bruce 2014

Autumn trees reflected in the still lake. © Jess Bruce 2014

As my energy has returned and ME/CFS  has lessened its grip on me through this last year, walking has become a staple in mine and Mr B’s weekend routine (and has continued to be a part of my own daily routine during the week). Walking is very much an activity in its own right for us now. On a Saturday or Sunday we walk for a couple of miles and have coffee or brunch out mid way. During our trip to the US back in April, Mr B and continued our walks and one day in San Francisco we managed just over 4 miles – and as you probably know San Fran is not flat terrain! So that was a doubly great achievement for me. Recently my Mum and I walked through East London reminiscing about the places Mum used to live and teach in her younger days. We walked 3.78 miles that day to Stoke Newington Whole Foods where I stocked up on Jess friendly foods (we got the bus home, I was tired and we had too much shopping)! For a girl who a few years ago could only manage walking for a matter of minutes and other wise needed to be pushed in a wheelchair, I hope you can see why I’m so proud, happy and relieved that I am now well enough to walk without debilitating consequences. Sometime after longer walks I am definitely achy and fatigued but it doesn’t last like it used to. I use the Nike Run App to track how far I’ve walked. It’s a great tool to use for pacing yourself both in an ME/CFS sense and an exercise speed kinda way.

Squirrel on the move © Jess Bruce 2014

Squirrel on the move © Jess Bruce 2014

The other day I took my camera out with me on my walk to Victoria Park, hence the photos peppering this post. The park is 0.7 of a mile from home, which was frustrating when I wasn’t doing as well as I am now. I’d barely get to the park before I had to turn back because my allotted walking time was up / I was tired and could feel symptoms creeping in. But now the distance to get there is nothing. The walk alongside London traffic and on grey pavements through concrete towers is worth it as you cross over the canal and see the green open space greeting you on entry into the park.

Geese on the move © Jess Bruce 2014

Geese on the move © Jess Bruce 2014

Earlier in the year I went on a spa break. One of the activities there was a moving meditation. I had no idea what to expect but it turned out to be a lovely, peaceful and grounding experience. My guide and I walked around the lush grounds of the stately home that housed the spa in silence except for my guide giving me instructions every so often: focus on your feet touching the ground, notice the textures around you, close your eyes and listen purely to the sounds, notice the smells, the colours, reach out and touch the leaves, feel the air on your skin. It may sound utterly bizarre, and I guess it was a bit. But it was such a peaceful, tranquil time and mindfully brought you into the very moment.

Serene and calm duck on the lake © Jess Bruce 2014

Serene and calm duck on the lake © Jess Bruce 2014

I was reminded of my moving meditation experience on my walk with my camera. Photography is a very mindful activity. Seems obvious but I’d never really realized that before. I was purely focused on the nature around me. I was focused on the reflections on the trees in the lake; on the colour and shape of the trees and their leaves and on the wildlife that came out to play whilst I was there: squirrels, ducks, geese, obligatory London pigeons and many other birds for which I’m afraid to say I don’t know the names. If only my Mum had been with me. She is a walking treasure trove of information and would have known for sure! It was a fairly grey damp Autumnal day. But as I turned back ready to walk home watery sunshine broke through the clouds for a few minutes casting beautiful shadows across the grass from the trees.

I’m no great photographer but I did enjoy taking the time to capture the park and it will be something I will definitely do again. It was a relaxing and uplifting experience and I walked 2.5 miles which will have burned a few calories to boot!

Do you enjoy walking? Is it part of your routine? Why not try a moving meditation style walk next time you’re out. I’ll leave you with a few more photos from my walk in the park as inspiration.

Undetermined bird on the move © Jess Bruce 2014

Moor Hen on the move © Jess Bruce 2014

Duck keeping watch © Jess Bruce 2014

Duck keeping watch © Jess Bruce 2014

And the sun finally appeared © Jess Bruce 2014

And the sun finally appeared © Jess Bruce 2014

The Secret of Chronic Illness

21 Nov
Copyright Jamie Weisman.

Copyright Jamie Weisman.

My sister sent me this quote a few months ago as she thought it was apt for me and what I’ve been through in recent years. I related to it the instant I read it. This is exactly what it’s like. It was comforting to read someone else’s words express so succinctly what, until that moment, I hadn’t quite been able to put my finger on.

Before I was ill, I ‘catastrophised’ and worried about EVERYTHING. With hindsight I can see that fear played a pretty large role in my life. If someone had told me 5 years ago that my life was going to be turned upside down by a chronic illness I would have been terrified. If I had been told that I would end up having to stop work and give up my career and wind up living back with my parents, away from my boyfriend and friends, too ill to go out other than for a short walk or in a wheelchair, too ill to wash and dry my own hair or to listen to the radio or cook or do any of the other things I love, I would have been petrified.

But somehow when all of these, horrible and unwanted, things did happen, I survived. I fought and, touch wood, I have managed to claw myself out the other side. If someone had told me that I would manage, for the most part, to live through all of this, with a smile and a positive attitude, I would have laughed in their face! Having a chronic illness has made me much more positive. That’s not to say I no longer worry, I still do. But it’s less catastrophic! I guess once the worst has happened – losing control of your health – you have no reason not to be positive. You’ve hit rock bottom. The only way is up.

That’s not to say that I wasn’t scared. I was. I was absolutely terrified. At the beginning I was bewildered and so very very scared. I had no idea what was wrong with me. My parents didn’t know. My Doctor didn’t know. And the unknown is utterly terrifying. As time passed I was so frightened that I was never going to get better. And as I did make baby steps of progress, the fear, that I would go backwards and get even sicker, grew stronger. But I learnt to balance the fear with the need to keep on living. I channeled my energy, what little I had, into living.

Amazingly, I managed to keep smiling. And despite my life being so different to where I thought I would be age 30 (high flying corporate lawyer living a busy London life), I am now, oddly, grateful for my illness. I am a very different person, a better person I would say, because of the enforced pause my life has taken due to my chronic illness. That is not to say that I don’t miss my old life and the old me. I do. Or rather I did.

All those sayings are true: ‘when life gives you lemons, make lemonade’, ‘learn to dance in the rain’, ‘I’m not afraid of storms for I am learning how to sail my ship’. This is not a rose tinted glasses moment. Clinging onto a positive outlook, and listening to empowering quotes such as these, helped save me.

In the quote above, Jamie Weisman says it exactly right. You learn to live with the fear. When the worst happens you do adapt and you do carry on with life. You have to, otherwise you’ve let your illness win. And that was something I was very determined never, ever, to let happen. You do compromise and you do have to accept losses. You have to grieve for the life you used to have. But ultimately you keep on living.

No person’s personality and situation is exactly the same as another’s, and so it follows that each person’s experience of chronic ill health is different. There is no one size fits all. That’s what makes recovery so challenging.

But if you can manage to let in a little of the secret, your struggle will become ever so slightly easier. No one’s saying it’ll be easy. But, as someone who has been there, trust me, it’s very worth it.

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