Category Archives for "My ME/CFS Journey"

Update: current ME/CFS flare is slowing me down

It’s hard to deal with these unexpected flares or relapses that seem to come out of the blue. 

You end up asking yourself a million questions. What did I do wrong? Did I eat the wrong thing? What did I do yesterday or the day before to cause this much pain? Why am I so weak today, did I overdo it this week? Was the TV too loud? Did I miss the signs and push too hard? Did I get over excited about something?

It can be a bit worrying when you are sure you’ve done everything right, but your body fails you anyway. The key is to not get distressed, because that just makes things worse. Stress absolutely is your enemy. 

This is what I’ve been going through the past couple of weeks. I initially thought I had a flare from my histamine overload and coming out of ketosis, but I’ve been back on the wagon for over a month and I’m just not getting better, some days even much worse. 

I’ve learned to accept what is, though I still shake my head at the bizarre symptoms that pop up every day. 

This week the main and most prominent symptom, apart from the increased exhaustion and pain, is the heart racing. 

I’ve moved my Fitbit back onto my wrist as I’m going to stop focusing on my step count (which is affected by arm movements, hence moving it to my ankle previously), and I’ll start focusing on my heart rate instead.

It is well documented that people with ME/CFS can pace effectively by monitoring their heart rate and staying within their personal limits. Mine, it turns out, are the same as an 89 year old! (I’m really only 36)

And during this current flare, my heart rate is almost constantly in my fat burning zone (supposed to be for moderate activity) even while resting in bed. When I stand up, go to the loo or brush my teeth it shoots into cardio zone, sometimes just turning in bed or lifting my head off the pillow can have the same effect!

A couple of days ago it shot right into peak zone at 130 from simply brushing my teeth (way past my personal threshold of 92)!

I’d love to know how a healthy person’s heart rate responds to these simple activities. 
Needless to say, I’m not getting much done as every little thing pushes my HR up so high and I feel awful until it settles again.

The slowing down of my heart rate can take quite a while sometimes, and other times it comes to a super rapid screeching halt and feels awful in my chest!

I haven’t figured out patterns yet, but all I know for sure is it helps to take note and behave accordingly, since I started paying attention to HR, I have been able to avoid awful going-to-pass-out moments that I was having up to just a few days ago.

I also know that right now it would be unrealistic and even detrimental to continue aiming for 1000 steps a day. I just cannot manage it. I occasionally hit 800, but mostly I’m not even checking. 

This November is all about a shift in priorities and definitely a shift in pace. I have been so much more active this summer, and the weather could even be a factor, that it’s of course frustrating to feel like I’m going backwards again.

The important thing to remember is that I’m not going back to square one. I’m just changing difection and waiting for the next gust of wind to push me forward again. 

This is just a season and it will pass. My aim now is to pay close attention to my body, the signals and the reactions, so that I can adjust and adapt to this new normal as soon as possible so I don’t accidentally  cause more damage. 

Another sign I’m flaring quite badly is that it’s only 10 pm and I am falling asleep! My usual bed time is between midnight and 1am so this is super early for me. I was already dozing around eight, but I’m trying to keep to my regular schedule else I risk causing sleep disturbances or even insomnia. I don’t want to go back to that.

Routine and structure are important. My brain is switching off now, the fog is coming so I’ll end this here for now.

Why I don’t go to A&E when my ME/CFS flares

waiting in the ER

I often see people with ME/CFS writing about how they have spent hours in the emergency room only to be completely disappointed, misunderstood or even disbelieved. They go to the emergency room because they are feeling so weak and exhausted that they don’t know where else to go or what to do, they’re scared because they feel so utterly ill. I understand the fear that leads you to that conclusion, it’s scary to lose control of your body, but it’s often an unnecessary risk to your own health. Let me explain why I think so…

From personal experience, and what I’ve seen happen over and over again in my support groups, it’s better for you to not go out during a flare. It would only make you worse, it’s a lot of exertion and sensory stimulation. Plus there is the added stress that inevitably comes from them not really knowing what to do with us or how to help.

I’m not a doctor, and you will know your body better than anybody else, but if I’m just flaring, and if I think about it I could probably tell whether I’ve overdone things and am paying for that or not, then I do not need to go to the emergency room. They will just carry out unnecessary tests, stress my body and my mind and the bright lights and noise will just cause my symptoms to increase, not to mention the travelling there and back that will affect me for days or even weeks to come.

If I feel like I’m about to collapse from exhaustion, I’ve already overdone it and need to be in bed, not driving around town and trying to explain this very misunderstood illness to hospital staff who won’t be equipped to do anything for me. Most people in emergency services won’t have even heard of ME/CFS and it won’t show up in any of their tests unfortunately.Continue reading

Update on my itching and ME/CFS flare

Low spoon warning

It’s been a while since I wrote a personal update. I have recently been extremely drained and weak, so haven’t been very social or active online. My primary focus this month was on my itching. I wanted to try to get it under control as it was really getting me down, much more than my ME/CFS does. I was in tears and so very frustrated. The scratching was utterly exhausting and to top it off, I caused myself a massive ME/CFS flare too!Continue reading

How I’m tackling this ME/CFS flare

It’s almost noon and I’m still in bed. I just Sat up actually when my sis brought me a nice big mug of decaf with coconut oil and quercetin in. Part of my morning routine now, though I’m starting to wonder whether coffee is one of my histamine triggers, despite being decaf. I might stick to golden tumeric milk instead.

The heavy ME/CFS passenger

I had been doing so well for so long that I had almost forgotten how bad these flares can get. It can be discouraging when you are reminded so unexpectedly of the horrible passenger you carry with you always.

This ME/CFS might be managed or worked around for a time, but it does come back to show itself from time to time, makes sure you remember it’s still there and just how strong it is.Continue reading

How carbs make my ME/CFS worse

I have spent so much time on the sofa and in my bed again this week. One would think I’d no longer be surprised by this, but I continue to shake my head every time it happens.

It’s the carbohydrate effect.

This current flare is most likely due to the fact that I’m out of ketosis again since trying to deal with my allergies/histamine disorder. I assume I’m no longer fat adapted because, amongst other things, my munchies have returned with a vengeance!

You see, I’ve increased certain carbs (mainly apples and sweet potatoes) which help reduce histamine building up in the body, but by trying to solve one problem (itching, hives) I’m causing another (ME/CFS flare).

It’s a vicious circle, but one has to decide what the priority is and work with that. For me it was the itching. I just couldn’t take it anymore!Continue reading

My wheelchair and I: shopping with the family

wheelchair in nursery

I actually left the house this week! Leaving the house is not something that happens very often when you have a chronic illness as debilitating as ME/CFS. Months can go by without seeing the other side of my front door. I have reached a point where I’m able to walk around the house daily without causing too much payback, but going out is still so utterly draining that it usually takes me days to recover.

This week I was able to leave the house for the first time in months. It’s my mum’s birthday today, but we celebrated a little early as our parents were here for their weekend. We went shopping together for the first time in ages!

It was a gorgeously sunny day, so I got dressed in a pretty floral dress and hopped on my wheelchair where I stayed all day. Knowing how taxing an outing is and how much sensory stimulation affects me, I tried to prepare as best I could:Continue reading

Still itching: time to find the unknown allergen

I’m still struggling with this allergic reaction that started in February. I initially thought it was the Keto rash and tried coming off the ketogenic diet to get rid of it, without success.

I then thought histamine intolerance, so I went low histamine, which cut out a huge amount of staples for me, including my main fat sources. So I added dairy back in.

This full body itch persists, I’m not sure what it is and it just won’t go away!

So I’m redoing my food list. I’m going dairy free again, nut free, caffeine free, as well as low histamine and Keto! It’s going to be tough.

I’m going to see if I can eliminate the itch by identifying the allergen. The doctors just prescribe antihistamines and I was told not to change my diet, but frankly I’m sick of them prescribing bandaid solutions rather than figuring out what the cause is. Continue reading

Too much of a good thing

If you’ve been following my journey, you will know that I’m currently experiencing an improvement in my condition thanks to the ketogenic diet I started earlier this year.

I thought it would be a great opportunity, having just passed international ME Awareness Month, to continue raising awareness and funds for ME research by setting myself a challenge.

Considering that I was almost completely bedridden for quite some time until last month, this is quite a huge deal.

I decided 1000 steps was a good place to start as that was what my fitbit was indicating. I have recently moved to a new home and through the packing and unpacking, I was reunited with my fitbit.

I wore it for a few days and noticed I was nearing 1000 steps a day, somewhere between 700 and 1000. I was so surprised and super pleased with the progress I was clearly making.

I started my challenge on 1 June 2017 and have managed to hit my target almost every day!

The idea is to aim for 1000 steps a day to raise £1000 for ME Research.

By keeping track of my progress with the fitbit and its app on my phone, I have noticed some behaviour patterns are emerging.

This past week I have managed to stay above 1000 steps daily, until yesterday. The problem was, as you can see from the image above, I overdid it on a few occasions and the flare day, yesterday, was inevitable. Continue reading

One of those days, again

Today is one of those days… 
I’ve overdone things this week. Went out to GP on Monday and although I was in wheelchair, it knocked me hard and I then also went into Sainsbury’s afterwards to get my meds, should have stayed in the hot car rather than going with into the busy supermarket, but the pharmacy had a delay in preparing my medication, so we thought the cooler shop would be better. 

Then the next day I somehow almost doubled my step count! Not sure how that happened, I was in the house all day. I really felt it in the evening though, so much pain… Not good. 

Last night my knees were on fire again and today I’m just drained. I didn’t even wake up until 10am! That is unusual. Silly me! I’m always too enthusiastic when I’m feeling good and then I overdo it. I’m sure a full day of complete rest will be good for my body though.

Be kind to yourself, your body works hard, listen to it, nurture and nourish it and don’t forget that rest is a vital part of life! 

No step goals today, just rest goals! 

Regardless of how weak I’m feeling, it’s a gorgeous day again, one can’t be anything but happy on a day like today! 

Hugs, Char

The randomness of ME/CFS symptoms

The following post was originally written in 2015, just a month after diagnosis, but I thought I’d share it for some insight into what day to day life is like with ME/CFS. I was still getting new symptoms constantly and they were all so new and bizarre to me.

Throwback to June 2015

This week I’d say my main issue has been pain. I’d wake up in pain, in the night, in the morning, I’ll have aches all day, toothache, headaches, migraines, stabbing pain, hip pains, light sensitivity pain… All sorts.

I’d still have a bunch of other symptoms, but I’d say it’s been a relatively good week.

I can function in the house with pain. I read, draw, cook, eat, maybe wash some dishes after, and I can rest whenever I need to. I sit down most of the time anyway, praise God my whole studio flat is probably the size of your average bedroom so there’s not much walking to be done!

My left arm is bleh most of the time, feels numb or dead and painful all at the same time, so sometimes I can’t even draw without the shakes coming on. The pain is mostly bearable, but sometimes it gets to the point where I need to drop everything and lie down. And admittedly sometimes I cry… Especially if it’s the stabbing pains in my hips, they’re just horrible! Continue reading