Hello, this is me having a grizzle aka moan, grumble, letting off steam, verbally wailing!
I feel like crap and it sucks! I hurt, a lot! I am mentally deficient right now, brain out of order is an understatement ~ this blog is taking an age to write (and re~write) most likely will be full of typo’s that spell checker may have missed. But I am on a mission to share continue to spread the word about this damn illness and hope it helps others if they wake up one day and wonder ~ what the heck is wrong with me? Then remember my blogs and think to themselves perhaps and go and get checked out. It creeps up on the unsuspecting, you never expect it to be you and boy is it a bugger when it is! What is it I am talking about ~ that bastard of an illness called Myalgic Encephalomyelitis (and yes, it has turned me into more of a potty mouth!)…
Why am I writing this blog you are most probably questioning, haven’t I already written many a blog about this illness and how we suffer. You are right I have, but yet there are still huge numbers of people who have no idea this illness exists or how it affects not only the sufferer but the families of those with it. I am seeking to raise awareness in my own grumpy way and hope that it reaches some people who had previously not been aware ~ for who knows, maybe one day you will get it or someone close to you will ~ if that’s the case at least you will know where to look for support and answers.
So ~ what is this illness I am talking about, how do you recognize it, how does it affect you? The top picture above by Margaret Knight expresses it perfectly but the following may also help clarify…
These are the typical features of ME/CFS
- Commonly, a previously fit and active person finds their illness triggered by an infection. Less common triggers include toxins, organophosphate pesticides, vaccinations, major trauma or stress (e.g. a road traffic accident), pregnancy and surgical operations. I use to be very fit and healthy, I played tennis, swam and walked 5~7 miles a day. My trigger was thought to be long ongoing episodes of stress. My daughters triggers were due to repeated viral infections. It is not something you expect or are able to avoid. I suppose it can be put down to just bad luck!
- In some cases there is no obvious precipitating event and the person reports a gradual decline in health over a period of months or even years. My health declined slowly over a period of 2~3 years, youngest daughter over a year and middle daughter more quickly over a period of months.
- The predominant symptom of ME/CFS is usually severe fatigue and malaise following mental or physical activity. The full extent of this exhaustion often becomes apparent only 24 to 48 hours after the activity (assuming, of course, the person was not already in a ‘recovery period’ from a previous activity). The severe fatigue is incredibly difficult to describe to someone who hasn’t experienced it. It’s like running a marathon through tar with severe flu and a hippo on your back. It floors you, and affects your brain and body.
The other main symptoms are:
- Muscle symptoms include exercise intolerance and post-exertional malaise (i.e. feeling shattered the day after undue physical activity), pain/myalgia (present in around 75% of people) and fasciculations (visible twitching of the muscles which sometimes includes blepharospasm/eyelid twitching). All 3 of us get post-exertional malaise, and constantly have pain which varies in severity but is always there, gnawing away at you. The muscle twitching causes us to sometimes spasm and spill or knock things over. It can at times be embarrassing if out in public.
- Brain and Central Nervous System symptoms include cognitive dysfunction (problems with short-term memory, concentration and maintaining attention), clumsiness, disequilibrium likened to ‘walking on rubber’, and word finding abilities. Problems with control of the autonomic nervous system results in palpitations, sweating episodes and symptoms associated with low blood pressure/postural hypotension (e.g. fainting). My brain is addled, my husband though I had early onset dementia and sent me to my GP. I muddle words, forget words, say the inappropriate word in a sentence without realizing, and sometimes lose all track of what I am saying and just go blank in the middle of a conversation. I walk into rooms and don’t know why I am there, I forget everything and write notes upon notes to try and ensure I don’t miss appointments etc, although this past year I have missed so many birthdays due to simply forgetting. I chip and smash glasses and crockery, spill food and burn myself or cut myself whilst cooking. I cannot read books or long articles, I tire during long conversations and zone out. I go through periods of feeling very hot to very cold no matter what the weather. It’s awful, you feel out of control of your own body and the worst of it is ~ sometimes I say out loud something I think I am thinking to myself OR I don’t say what I am thinking out loud when I think I am! Confusing? Yup, just a little!
- Symptoms which suggest on-going abnormalities in immune system function include sore throats, enlarged glands, joint pains, headaches, problems with temperature control and intermittent flu-like feelings. Sore throats and enlarged glands are regular occurrences, joint paints constant and headaches etc intermittent.
- Other symptoms which frequently occur in ME/CFS include sleep disturbances (often increased requirements at the onset followed by an inability to maintain a full night’s sleep), alcohol intolerance (a very characteristic feature, particularly in the early period of illness) and irritable bowel symptomatology. I have insomnia throughout the night then can fall deeply asleep in the morning when I need to get up. If I do sleep I wake regularly so never get a full deep sleep. My digestive system is shot and bowel issues ~ well let’s just say they are definitely an issue!
- Some people also develop emotional lability or mood swings and features of clinical depression as time goes on. Yup ~ I am an emotional wreck, cry at the drop of a hat, suffer anxiety and depression and sometimes just don’t want to go out or see/speak to anyone for weeks on end.
Besides these more obvious and wide-spread symptoms there are also myriad “minor” ones. Not everyone experiences all of them and often they are not mentioned when patients describe their illness; however there is often very visible relief when they find others, too, have similar experiences. ME/CFS symptoms tend to fluctuate in severity throughout the course of a day and people often report that they have both ‘good days’ and ‘bad days’, although the term ‘good’ is often used in a relative sense. The illness nearly always results in a severe reduction in a person’s ability to cope with all aspects of normal daily living (i.e. social and sporting activities, employment, household tasks). Relapses or exacerbations are often precipitated by infections, excessive physical or mental stress, general anaesthetics and surgical operations, and extremes of temperature. I am lucky in that my husband and daughters are hugely supportive of me and they understand the limitations of the illness seeing as it’s been part of our lives for the past 6 years. It affects every aspect of your life which has a huge impact on your social, emotional and physical wellbeing.
I believe over the past 6 years that things are slowly changing but the change is slow and frustrating. This illness can make you feel invisible and useless but when I read the following it made me smile, no matter how awful you feel you can still have an impact on the lives of others in a possible way ~ it’s a reminder not to give up and close yourself away…
Finally, something else I read unrelated to ME but which I loved and is something we could all do with remembering….
So, that’s all from me for today, my brain is fried and I am sure I wanted to say an awful lot more but perhaps I’ll remember later and put it in another post. Mind you I do feel a little better for getting it all off my chest and having a satisfying virtual moan about life and this damnable illness.
If you have this illness though please go and look up Invest in ME and Let’s Do It For ME ~ if you have a child with it then The TYMES Trust will be able to offer advice, guidance and support. You aren’t alone, there are lots of us out here and ready to befriend and help you.