ME Awerness Week- And the rest

This week is ME awareness week. ME (also known as CFS) is generally categorised as fatigue lasting more than three months and not explained by another diagnosis. But it’s so much more than feeling tired, so this week I will be concentrating on a different symptom each day and how they affect me. For more information on ME see the ME Association website.

I didn't post yesterday because well I wasn't well enough so I'm calling this post and the rest.

Ongoing flu like symptoms is probably the hardest to explain but its something everyone has experienced. In fact if you had the covid vaccine hangover you've experienced it very recently. Its that general unwell feeling you get when your immune system is fighting something in your body. I constantly feel like I'm "coming down with something". It can make it really hard to tell when I'm ill. A lot of times I don't know if I have a cold or "just ME".

At times light and sound get physically painful. Thankfully I'm not one of the people for who this is a constant problem. 

Smart bulbs are great for this because I can alter the colour and brightness to one that is less painful. Unfortunately the outside world is not as easily controlled. To try to cope with this I'll often be wearing sunglasses even on overcast days. And blue light filtering glasses can help in brightly lit places like shops. I have a wide range of earplugs and noise cancelling headphones are a blessing.

Gastrointestinal problems is a horrible symptom which thankfully hasn't effected me too much. I do currently have problems with digestion but I'm really hoping they are down to my gall stones and will magically disappear when my gall bladder is eventually removed.

The medical response to this symptom is terrible. People are often left relying on liquid food. It has even led to people with ME literally starving to death when doctors didn't believe them about the problems there were having with food.

These are all the major symptoms but there is a long list of other symptoms that people experience with ME. For me there seems to be just a general worsening of pre existing conditions. Foe example my asthma, allergies and eczema are much worse than they were.

I am generally considered to have moderate ME (the rating scale can be found here). It even seemed to be improving to the point where it could be considered mild before I suffered another set back. I can care for myself and work part time with some adjustments (but I have to sacrifice anything fun to do that). I can walk short distances but need a mobility scooter for longer ones. I am in the weird hinterland of being disabled but not disabled enough to qualify for any help. I am aware how much worse off some people are with this illness but even those of us with mild and moderate ME need much more help than we can currently access.

Me Awareness Week- Dizziness

This week is ME awareness week. ME (also known as CFS) is generally categorised as fatigue lasting more than three months and not explained by another diagnosis. But it’s so much more than feeling tired, so this week I will be concentrating on a different symptom each day and how they affect me. For more information on ME see the ME Association website. 

Today I am focusing on ,what is probably the worst symptom for me,dizziness.

Autonomic symptoms are very common in ME/CFS, and orthostatic intolerance refers to an inability to sustain upright activity. Symptoms of orthostatic intolerance occur after standing up from a recumbent or resting position or after prolonged standing. They include lightheadedness, spatial disorientation, feeling faint, sweating, palpitations and fainting.

Its usually worse when standing still and moving around helps. So normally I can stand for just a few minutes before I start to get dizzy but can usually walk for longer without problem. Until I over exert myself and then I'll be hit by a sudden feeling that I am going to faint. But some days I cant even sit up without my heart rate shooting up and feeling like I'm going to faint . At its worst I couldn't walk to the bathroom without leaning on the walls for support.

This for me is more debilitating than any other symptom. I can push through pain or feeling tired (I shouldn't but I can) but there is nothing you can do when your vision starts to go black and the world is spinning. I often refer to it as exploding head because its also accompanied by pressure in my head and tinnitus.

ME Awareness week- Sleep

This week is ME awareness week. ME (also known as CFS) is generally categorised as fatigue lasting more than three months and not explained by another diagnosis. But it’s so much more than feeling tired, so this week I will be concentrating on a different symptom each day and how they affect me. For more information on ME see the ME Association website. 

Today I'm focusing on sleep problems.

I have always had a tendency to suffer from insomnia. Even as a child I rarely slept through the night. And as an adult I'd go months with only a few hours sleep each night. But since having ME this has got much worse.

The biggest problem is unrefreshing sleep. Often on paper it looks like my sleep is fine. I get the right amount of sleep but still wake up feeling like I've not slept. As well as this I can cycle between insomnia where I get little sleep or hypersomnia where I cant wake up. I sometimes joke that I've turned into a cat because some days I can sleep for 20 hours and still need more sleep.

There isn't any specific sleep advice for people with ME. I already had good "sleep hygiene" because of the years of trying to cope with insomnia. But I needed to find even more ways I could improve my sleep. and I have by making lots of changes. Some of the things I've done to improve my sleep:

• Fitting black out blinds and curtains to make the room darker
• Using smart lights that change the type of white light so I get more blue light during the day and yellow light in the evenings (replicating natural light like this helps maintain circadian rhythms)
• Using blue light glasses and screen settings to reduce the blue light from screens
• Not using my phone at night 
• getting a new mattress and pillows so I can support my body better in bed
• taking pain killers and CBD before bed
• playing sleep music
• journaling 
• getting a weighted blanket

Basically just making sure the environment is the best I can get it to help me sleep. Even with all that I still often struggle to get enough sleep.

ME awareness week- Cognitive dysfunction

This week is ME awareness week. ME (also known as CFS) is generally categorised as fatigue lasting more than three months and not explained by another diagnosis. But it’s so much more than feeling tired, so this week I will be concentrating on a different symptom each day and how they affect me.

Todays symptom is cognitive dysfunction.

These problems are often referred to as ‘brain fog’ by people with ME/CFS. Commonly including problems with:

• short-term memory and working memory (the ability to deal with tasks quickly),
• concentration and attention span (especially affecting visuospatial tasks),
• an inability to plan or organise thoughts and problems with word-finding abilities
• anomia (difficulty in naming common objects) and dysnomia (the inability to give objects a correct name).

Cognitive dysfunction is exacerbated by physical exertion and stress. Its often severe enough to cause a substantial reduction in previous levels of occupational, educational, personal and social activities. 

The most visible way this effects me is loosing words or saying the wrong words. Also difficulty understanding what is being said to me and communicating in writing. This has a lot in common with migraines. I used to suffer them a lot as a teenager and loosing communication was one of the major warning signs for those.

Often the results of brain fog are funny. Apparently my brain thinks everything lives in the fridge. But usually its frustrating and sometimes dangerous. Having to run through the steps of a task one by one multiple times because you cant remember what you were doing a few seconds ago just wastes so much time. But when I'm stood with a packet of painkillers in my hand with absolutely no memory if I've taken them or not I'm faced with risking an overdose or facing the rest of the day in pain. Or I can get completely lost in familiar places as my brain just doesn't recognise anything.

I have coping mechanisms in place. I make sure I use a pill box so I can see if I've taken a tablet or not. I have reminders set for everything and notes in my phone for the things I'm likely to forget. Even using these I forget things and relying on these coping mechanisms uses a lot of energy

The worst thing about brain fog is that it takes away the joy in things. I often struggle to follow a conversation or the plot of a tv show. I cant read a book as I wont follow the story. I'm learning to play guitar but my brain just wont take in the information.  I often just cant do any of the things I enjoy. You feel like you are loosing yourself.

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ME awareness week- Pain

This week is ME awareness week. ME (also known as CFS) is generally categorised as fatigue lasting more than three months and not explained by another diagnosis. But it’s so much more than feeling tired, so this week I will be concentrating on a different symptom each day and how they affect me.

Today I'm talking about pain.

Pain is an unusual symptom for me. Because, although I was suffering from muscle fatigue, I didn't have a lot of pain until my other symptoms had started to improve. Also it is the only symptom that doesn't improve with rest.

There is a lot of similarity between ME and fibromyalgia. Some people believe that these are the same illness. Others believe that fibromyalgia is a symptom that some people with ME experience. They are quite often they diagnosed as separate illnesses and treated by different specialists. Which diagnosis you get mostly seems to depend on which symptom you present with. So because I experience fatigue first I was diagnosed with ME. Had I experienced pain from the start it's likely I would have been diagnosed as having fibromyalgia. There does however seem to be a difference in the way people respond to treatment. Some people with fibromyalgia find that exercise helps which of course is the opposite for people with ME. Personally I feel that it's likely both ME and fibromyalgia are not a single illness but are symptoms of a group of autoimmune disorders.

What causes the pain that people with ME experience? 

It's never been fully established. However, many doctors will say that it's just that we have become more sensitive pain. I have never seen any evidence that supports this assertion. In fact, people with chronic pain tend to be able to tolerate a higher level of acute pain because they are so used to functioning while in pain.

The leading theory (with a growing body of evidence) is that people with ME cannot properly metabolise lactic acid. If you've ever had a heavy workout at the gym you have experienced what a buildup of lactic acid feels like. Your muscles feel weak, stiff and painful. This is what I feel like everyday.  I wake up feeling like I've run a marathon, even if I did nothing the day before.

What treatments do help?

I am on slow release tramadol it doesn't stop the pain but does bring it down to a more manageable level. Without that I would be a lot more disabled by my pain. I do do yoga but don't find that this helps with the pain at all (if anything it increases my pain). Things that do help are massage, soaking in Epsom salt bath's, CBD balms (i.e. things that help with inflammation in the muscles) and painkillers. 

The treatment of chronic pain is a controversial subject. There are constant threats to remove access to painkillers as they don't "treat the cause of the pain". However, they are not proposing to replace them with any treatment for the cause of the pain. Mostly you'll be told to do yoga and meditate the pain away. 

For more information on ME see the ME Association website. 

ME Awareness week- Post Exertional Malaise

This week is ME awareness week. ME (also known as CFS) is generally categorised as fatigue lasting more than three months and not explained by another diagnosis. But it’s so much more than feeling tired, so this week I will be concentrating on a different symptom each day and how they affect me.

Today I’m concentrating on post-exertional malaise (PEM). It’s the key diagnostic feature of ME/CFS and describes the way in which symptoms worsen after activity. 

This has been measured. People with ME were tested using two-day cardiopulmonary exercise tests. They perform the same activity 24-hour is apart and a significant decrease in performance was measured on the second day.

The effect of PEM is usually delayed so I can do an activity and feel fine. But then later that day, the next day or even two days later I’ll experience an increase in symptoms and crash. This makes it really hard to gauge what activity is going to cause a problem. An activity I can do one day without issue may trigger a crash on a different day. Quite often I experience what I call slow crashes. This happens when don’t overdo it so much that I crash from one days activity, but instead my symptoms slowly worsen each day until I reach critical point and crash. PEM also means it is much longer for me to recover from activity. Usually, for each busy day that I have I need about three days to recover. This is just a rough estimate and it can take much longer.

There is no treatment for PEM. All we can do is try to avoid triggering it by pacing. The current guidelines for pacing are that your heart rate shouldn’t go above 15 bpm over your resting heart rate. For me this means my heartrate should stay under 85 bpm. This is extremely difficult to do. Ideally, I’d have a heart rate monitor that would alarm when I reach this limit. However, the ones on the market are aimed at fitness enthusiasts rather than medical devices. So, it relies on me constantly checking my heart rate. Some days just sitting still my heart rate is above this. Other days I can walk upstairs and still be under that limit. Most days I spend at least two hours above 85 bpm, which means I’m constantly running the risk of crashing.

Once PEM is triggered all we can do is rest. But it’s often a vicious circle. Because while we are experiencing a crash the threshold for causing PEM is much lower. So for example, on a good day showering is no issue for me, but during a crash it will cause PEM. So just doing basic personal care tasks, like going to the toilet, washing, preparing food and eating, prolong the crash.

Unfortunately despite this symptom being well documented exercise is often still prescribed for people with ME. My GP still believes that I should be exercising. I have tried just going for a short walk everyday, but this just led to a crash.  Thankfully, the guidelines treatment in the UK are being updated to reflect that exercise is not an appropriate treatment. However, this will take a long time to filter down to treatment of patients.

Review: Smartchord

The second in my reviews for beginner guitar players. Smartchord is a great all rounder ap. There are so many features here.

The thing I like most about this ap is the ability to design your own excercises. So you can practice scales, arpeggios,chord transitions and picking patterns ect. It even has an ear trainer and a fretboard trainer.

The chord progressions is just one example of this. You can program in your own progressions to practice and turn them into speed training excercise or set a timer to practice them at a steady tempo. This makes it really useful for drilling new chords or for getting a song programmed into your muscle memory.

It has a huge database of chords and fingerings. So you can look for alternate ways to play what you are looking for. But you can also ask it to narrow down what it suggests to just your favourites, to just Barre chords, to just CAGED fingering. There are so many ways to search and filter it can be a little overwhelming.

And if that's not enough you can add custom chords.

So far the only thing that's missing from the ap in my opinion is interval training on the ear trainer. However the developers are really receptive to feature suggestions and really helpful if your struggling with something.

In summary this is a great all rounder ap loaded with features and is constantly developing.

Cost: free to £17.99 (Unlimited)

The free version is good and has lots for beginners. You can buy the premium version of features individually or they regularly do offers for bundles. But I'd recommend buying the Unlimited version for access to everything. It's expensive for an ap but you'll get a lot of ap for that money.