Symptom: Non-Medical Issues

In addition to the numerous, various, and changeable medical symptoms that are part of CFS/ME, people have to deal with non-medical fallout. Below are a few examples:

Emotional issues. These have been covered somewhat already, the main one being depression – not necessarily a symptom of CFS/ME but often a subsequent result, many people with a chronic illness develop depression to some degree. The source of emotional difficulties may lie with the illness itself, (frustration, guilt, anger etc. over new limitations and sufferings) or with outside sources such as how other people treat you and react to the changes you have to make. A greater portion of time spent at home and/or alone can bring its own issues, and then fear and self-restriction can creep up on a person with CFS/ME if they’re not careful.

Relationships. Many people with CFS/ME find they lose friends, fall out with family members, break with partners, struggle to maintain dealings with work colleagues. . . This is understandable when you consider you’re going through a major life change, where many of your routines and habits will need to be altered, and you might not remain exactly the same person as before. It doesn’t make the ordeal any less painful. There is advice available on how to talk to other people about CFS/ME, and this may help, but some people will simply never understand the condition no matter how much either of you try. You may be able to stay friends with these people, you may not. If you usually end up feeling bad after seeing a person, it may be you have to make the decision not to see them any more: you will most likely have enough to feel bad about without someone else making things worse.

Personality changes. This is not a definite thing, but it seems to me that if you have a serious, long-term condition which has a history of other people misunderstanding it and treating sufferers poorly because of it, you are more than likely to see some changes here. Especially as, if you are to have any hope of managing the condition, you need to make life-style changes. Depending on the severity of the symptoms, changes may only be small, they may be short-term. . . or they can be permanent. Smaller changes might be that you take up a new hobby – yoga to help with stress, a craft to fill in time if you have to reduce your working hours. Your mood may become more uncertain, especially while you first adjust, and later it could depend on if you’re having a good day or bad.

A bigger change might be if a lot of people around you see you as becoming withdrawn, lazy, selfish – very negative viewpoints on what you have to do to manage CFS/ME. Having to give up work can also leave people with something of a difficulty, both emotionally (work can be very tied in with identity and sense of purpose) and practically (what to do about money, finding a useful/productive/fulfilling way to spend your time)

Money issues. These arise from having to reduce your hours, go to part-time work, or give up work altogether. Having money worries can lower your self-esteem and leave you feeling inadequate, take away your self-sufficiency, and cause additional stresses. It can also have a negative impact on your diet, and limits your available activities. It’s hard/impossible to get disability benefit when you have CFS/ME unless you are in a bed-bound situation and have no possibility of working at all.

Filling your time. This can be challenging as you have to suit your activities to your current abilities, and these can vary hugely. It’s also hard if you’re used to being in work and you suddenly find yourself with empty days to fill, days when you can’t do things you used to do on a day off.

These are a few of the non-medical things that may not be immediately apparent to either those diagnosed or those around them, but I believe (unfortunately) that all people with CFS/ME will face these at one time or another.

 

 

Symptom: Isolation

penguin-48559_640.pngWhen you think that people who are well can end up isolated, it’s easy to accept that people with a chronic medical condition can go the same way. Isolation can be physical, emotional, mental (and I don’t mean all in your head), it can happen to you, or you can bring it on yourself. Having any medical condition can be isolating, but – and this is just my (probably biased) opinion – ME/CFS can be somewhat more so than many other conditions because of the broad range and lasting impact of symptoms.

With ME/CFS, physical isolation comes about because it’s harder for you to get out of the house never mind socialise, and even if people are willing to come to you, you may not be up to seeing them. It’s quite easy to become nervous of going out, accustomed to being alone, and your ability to interact comfortably with people diminishes. Like anything, if you don’t use it you lose it. The condition may also make it harder to be around people, not just because of the fatigue but other symptoms such as being sensitive to noise, suffering from pain, or having to socialise through the screen of Brain Fog.

Emotionally you may find it difficult to connect with people, your relationships are put under greater strain, and your emotions and moods themselves may drive people away: it’s tough to be around someone who’s depressed or angry – sometimes I wish I could get away from me, so I can perfectly understand why other people want to! Worse, feeling emotions can be draining, and so you may keep yourself away from people to limit that strain. Also, if you have Brain Fog it can be difficult, embarrassing, and frustrating trying to keep up a conversation.

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By mental isolation I mean thinking/feeling that no-one can understand what you’re going through, that you’re the only one, that you’re no longer ‘normal’. . . Having these feelings (while totally normal) can influence not only whether or not you choose to interact with people, but how you do so. If you ended up losing a lot of friends at the beginning of your illness, it can be doubly hard to put in the effort and risk making yourself vulnerable again by getting to know new people. There’s also the issue of when, how, and how much to explain about your condition.

Another consideration is priorities, and how you relate to your friends.  If you used to spend a lot of time together either working or going out, and suddenly you can’t, can you still relate to these people? Do you still know and care about the people and topics discussed? If not, you need to find out what does interest you now and maybe even a different way to connect with people.  Because managing this condition usually requires many lifestyle changes, and you may become something of a different person in order to cope. (By choice or necessity)

Having said all this isolation, like ‘alone’ or ‘single’, doesn’t necessarily mean something bad or that you’re lonely. Some people don’t like crowds, don’t have a lot of friends but a few really good ones, prefer an evening in watching a film or reading a book to going out. . . Some write a blog and connect with people online. In other words, just because you don’t have those stereotypical scores of friends and endless social activities doesn’t mean you’re abnormal. It doesn’t mean you’re not making the most of your life. Sociability is a sliding scale and you have to find the point – the balance – that’s right for you. Why do you think some people love living in cities while some live in inaccessible mountain valleys?

The difficulties (for anybody) come when you want to be around people but struggle to do so. Basically, it matters when your isolation affects you mood and/or quality of life.

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Symptom: Affects on the Nervous System

Basically the nervous system is the thing that transmits signals around the body, and if something interferes with it, all sorts of things can be affected. Some symptoms people with ME/CFS may suffer from in relation to the nervous system are:

  • Difficulty with temperature control, and night sweats
  • Tachycardia (rapid heart beat) & palpitations
  • Narrowing of blood vessels can cause facial pallor, cold hands and feet
  • Sudden changes in blood pressure can cause a feeling of faintness or fainting
  • Difficulty with balance
  • Disruption to sensory nerves can affect how you feel pain, pressure, temperature. It can also cause numbness, pins and needles, or an increased awareness of sensation

Usually none of these symptoms are life-threatening in themselves, but they can cause more serious issues. They can also be scary, debilitating, frustrating, or at the very least an additional problem to struggle with.

Apart from people constantly saying how pale you look, or the possibility of falling and injuring yourself, there are other considerations. If you feel you can’t trust your senses, it’s another reason to shut yourself away from the world. Ditto for feeling faint or having uncertain balance – even if you don’t fall you’ll probably be worrying that you might. Feeling cold is another thing that encourages you to stay curled up somewhere, and just putting on more layers really doesn’t help. Take it from one who has tried it!

Symptom: Psychological & Emotional Issues

The main psychological and emotional issues faced by sufferers of ME/CFS are:

  • Depression
  • Anxiety
  • Emotional Liability

Depression is a separate illness in itself, but as with other conditions many of the symptoms are similar to those of ME/CFS. (Similar but not indistinguishable – there are differences to look for.) For example, depression can make your feel fatigued and disconnected, you can have difficulty concentrating or get aches and pains with no obvious physical cause. Sound familiar? These days there is a lot of information around on depression, the top site when I searched being

Mind: the mental health charity.

There you will find information on many types of mental health issues including depression and anxiety, and suggestions for where to look next if you think you might need more information, help or support.

Unlike depression and anxiety, I had never heard of emotional liability until I read ‘Living with ME’ by Dr Charles Shepherd. In this book he explains that emotional liability is when,

“. . .the emotional state and mood may start to fluctuate widely, often for no apparent reason. . .”

Although it is sometimes connected to the frustrations of living with ME/CFS. Unexpected tears, irrational anger, or sudden low spirits can all be part of it.

Bizarre as it may sound, having a possible explanation – even if there’s no treatment – may make a person feel better simply because there is a reason for how they’re feeling. I experienced it when I was first diagnosed: the relief of having an explanation and knowing I wasn’t making up how badly I felt, of having someone say it was ok. It happened again when I started researching the condition recently: when I read about emotional liability I had one of those ‘that is so me!’ moments, where before I’d thought I was just being bad tempered. Then again, maybe I was. . .!

Put another way, although I’ve lived with this condition for years I hadn’t realised how many different things it can affect both physically and emotionally, and that there are levels and nuances between clinically depressed and low spirits. I’m not physically better for knowing this, and it doesn’t stop me feeling bad, but it has given me some sort of reassurance/comfort/positivity/solid ground from which to face the difficult times.

Symptom: Cognitive Dysfunction (Brain Fog)

Brain fog is the perfect descriptor for this symptom. Sometimes it’s so thick you can’t find anything through it, sometimes (thick or thin) there’s a moment of clarity before you’re enfolded once more, sometimes it’s so light as to be almost not there. But what is it exactly?

“Cognitive disorders are a category of mental health disorders that primarily affect learning, memory, perception, and problem solving, and include amnesia, dementia, and delirium.” Wikipedia.

In addition to these issues mentioned above, there can be difficulties with concentration, speech and finding the right word for something, and the ability (taken for granted by most) to simply have a single complete, coherent thought. Given all this, it isn’t surprising that cognitive dysfunction makes it difficult (at times impossible) to carry out daily activities, or to take part in social interactions. Basically it can become difficult to function in the world.

Most people will have ‘senior moments’ where they forget where they put something or walk into a room then wonder why they went there. Brain fog for people with ME/CFS has been likened to that experienced by people with dementia, except that at some point ME/CFS brain fog will lift and the persons mental capabilities are undiminished.

Some find it more debilitating and say it reduces their quality of life more than any other symptom, including fatigue or pain.

The struggles caused by brain fog can also result in emotional throw-back: anger and frustration, anxiety, feelings of worthlessness, guilt if you have to rely on other people, embarrassment if you repeat things because you don’t remember them being said or you trail off in the middle of a sentence when you can’t remember the word for the thing you put in the grill and eat at breakfast. . .

As with any other aspect of ME/CFS you pretty much have to accept it happens and wait it out, finding ways to cope in the meantime. Because pushing through and overworking mentally can give a setback just as surely as overdoing things physically or emotionally.

For those who have to go through it (both those with ME/CFS and their families and friends) be patient and try to give the person suffering it a break. Laugh at your forgetfulness rather than getting angry or tearful, because at least you can be reasonably sure the fog will lift eventually.

Symptom: Pain

Muscular pain, joint pain, headaches and migraine. . . ME/CFS sufferers can have them all. Or none. They can also vary in severity from an being an irritation, to a constant and disabling affliction.

According to the ME Association, approximately 75% of people with ME/CFS suffer some degree of pain.

Unlike many aspects of this condition, this symptom can be treated using any of the usual methods of pain relief: drugs, acupuncture, massage, herbal remedies, a hot bath. You just have to find the thing that works for you.

Thankfully, I haven’t suffered too severely with this symptom. I used to have joint pain and headaches a lot, but I seem to have left that behind. Mostly. Now I get headaches sometimes and the occasional migraine, and it’s a fortunate person indeed who can say they never have either of those so I’m not complaining.