I am sitting in a lethargic haze at my PC, feeling most peculiar due to a nasty flare up of Fibro pain. This time it is my right neck, shoulder and part of my chest wall, oh..., it is also radiating down my right arm. So much so that it has affected the strength and muscle tone of that arm and the pain awakens me at night as I am unable to relieve the pain by altering my position.
I embarked on yet another diet this morning; pills, pills and yet more pills! Oh..., I am not at all a happy bunny today. I am pretty well sedated by the coctail of pain relief I am taking at regular intervals throughout the day. It includes quantities of Solpadol (Codeine & Paracetamol), Zydol (which isn't narcotic, despite behaving like one), Lyrica (an anti-epilepsy drug which is somehow great for nerve pain), Prozac (which is good for nerve pain), and Amitriptylene (a potentially addictive tri-cyclic antidepressant which is very effective in terms of pain relief and relief of insomnia), and don't forget Cataflam (non-steroidal anti-inflamatory). My goodness; what a mouthful - figuratively and literally!
Recently a psychologist; whom I am attending at the request of my Rheumatologist, told me "that Fibromyalgia was related to how (I) am feeling." He made it clear that he didn't wish to get into an argument about this statement. My mood is far more likely to be affected by the pain, & it's debilitating effects, that I experience everyday of my life! I am very much inclined to tell the lovely, lovely French gentleman where to SHOVE it!
The previous week the same man told me that he didn't believe my memory had been sufficiently impaired as to be problematic. Indeed, he can't see any problem with it at all! The fact that BB's friends are convinced that I have Alzheimer's Disease is obviously irrelevant; as is the fact that BJK keeps reminding me of missed appointments and conversations that haven't taken place. Go figure...!
Despite the huge handful of hope (aka medication); the pain remains, though the senses have gone! I don't enjoy the sensation; being out of my tree isn't a giggly high, or a mellow "Hey man...!" It is a sluggish & lethargic heavy fatigue; it interfers with my comprehension and concentration. Heaven knows; on the best of days my concentration levels are variable; the BRAIN FOG that accompanies the Fibromyalgia takes care of that! No, I definately do not like being under the influence; especially as I am still in pain and contemplating my next dose of confusion.
I remember being told; during my student days, that clock watching was a sure sign of pending narcotic addiction. My Family Doctor was concerned about my regular use of codeine based pain relief; believing ME to be in danger of addiction.
I now know that clock watching probably has more to do with pain than addiction. If I were addicted I would be self-medicating a little too frequently; instead I prefer to go by the clock, I am only too aware of the horrible effects of drug addictions. After all; I have nursed many addicts during my nursing career!
Rather than trust my ability to self regulate my Family Doctor prescribed tri-cyclic antidepressants, which have proved successful in the treatment of Fibro pain. Unfortunately, during an intense flare-up Amitriptylene is insufficient and I have to resort to codeine anyway!
As I sit staring intensely at words on the monitor, my right arm is clutched tightly to my body; an effort to restrict movement of the shoulder, while the rest of my body is happily floating off somewhere towards the rear of the house! It's a shame my mind isn't quite so happy. And NO! There is no chance of me becoming addicted or abusing my pain killers 'cos it's horrid...
My rant today is soley motivated by the fact that I AM suffering a flare up of a condition called FIBROMYALGIA. It is NOT, I repeat NOT a psychosomatic disorder and frankly, considering the debilitating effect of the pain and the drugs I am taking in an effort to control it; I resent the implication implicit in " (my) feelings affect the way (my) body feels."
To many doctor's FIBROMYALGIA/ME/CHRONIC FATIGUE SYNDROME is little more than an exclusion diagnosis. An exclusion diagnosis means that IT is only diagnosed in the absence of abnormal test results to exclude anything else. Outside of the medical fraternity Fibromyalgia is a little known condition.
To make matters worse; Fibro sufferer's look normal. We look pretty healthy. Our families & friends don't realise that we often can't join in; it's not that we don't want to! The condition gives very few hints to those on the outside and we are often accused of being lazy or disinterested; or depressed.
Were I suffering from depression and let's face it; EVERYONE has bad days, it would almost certainly have a lot to do with the fact that little sympathy is forthcoming & the medical fraternity is clearly divided in its view of what is to many a very REAL and FRUSTRATING condition.
I might be medicated with psychotropic drugs (ie happy drugs) and anti-epilepsy drugs, but I am NOT under the care of a psychiatrist, never have been and certainly Do Not intend to be! Nor do I have epilepsy or indeed depression...!
So, let me ask you a question; if I were to borrow my mother's Mink Coat, would that make me a mink? I think not!
Showing posts with label brain fog. Show all posts
Showing posts with label brain fog. Show all posts
Tuesday, November 20, 2007
Thursday, October 4, 2007
Blog, blog, blog
Hi there!
You know;when I started blogging I had a number of reasons in mind;
I actually don't like the word normal because it infers that anything which lies outside of its parameters is abnormal. I personally consider that a better choice of wording is average.
--------------------------------------------
In terms of treating patients I cannot recall the many thousands of times when I have been asked "is it normal, nurse?" Most often they are enquiring about their pulse rate, temperature or their blood pressure. On the surface that is an easy question to answer; a simple yes or no would suffice; but, would it?
I have always considered that it is best to be truthful, while protecting the patient from startling facts which might upset them. It is a difficult question to answer, considering that there is no such thing as 'normal'!
Almost always I will answer, somewhat evasively, that it is what one would expect given their age, circumstances, etc., or that it is within expected parameters.
First of all I do not wish to be the person who eroneously informs the patient that in fact everything is not as it should be, or the person to tell the patient that everything is normal when in fact it isn't.
For most people the answers that I choose to give; when asked this question, is more than satisfactory. Only a very few want to know the intimate details of how their bodies fit into the parametres described as normal or anticipated.
I do not believe in telling lies, at least not intentionally. From time to time, like most people I might tell the occasional un-truth, generally due to misunderstanding or misinformation.
Unless I am having a bit of a laugh and playing a trick on someone I do not tell lies, it is not how I was raised and anyway, I can't do so for toffee! When there has been an element of deceit involved in some such plot; I will always apologize and offer an explaination myself to the recipient afterwards. I am normally forgiven quite readily.
-------------------------------------------
So far, the story to date is that I am a forty-something trained nurse; working in a specialised unit in an HSE Hospital, Somewhere in the Midlands. Due to ill-health I am taking a break to concentrate on the more important things in life, like my health and my family.
As an interest I started to make greeting cards and have been doing so for the past year. I have progressed so quickly in terms of skill and knowledge and am now able to sell my cards, for a reasonable cost.
During this time I have indulged my second passion which is photography. Since BJK gifted me a Canon Powershot digital camera have been enjoying including the occasional photo in my range of cards.
What I have discovered about myself is that while indulging my creativity my mental acuity has improved dramatically. I have good days and bad days, like most people; except my bad days really are bad days.
If I am short of sleep I suffer what can only be described as brain fog; a common complaint amongst the ME/Fibromyalgia/CFS community. On a good day, when I have remembered to take all my meds on time I feel like a million dollars. There is no consistency in my condition and I plan my life accordingly.
At last I am beginning to pace myself. In the past if I was a bit slow after a weekend off, it was probably due to copious amounts of alcohol and very little sleep for three days. Nowadays a glass or two of wine or not taking my tablets till late will have the same effect. If I forget to take my tablets I am doubled with pain, sometimes severe and other times so slight that I feel a bit like a junkie as I take my codeine; nothing else is effective.
I can no longer mash potatoes, so we have them boiled in their jackets. The skins carry the nutrients anyway. DG or BB will mash if they are around. My beloved Le Creuset Saucepan set is too heavy for me to lift without pain. Everyone knows not to get in the way if I am wielding it; from pillar to post and God help anyone that gets in the way as once in motion I cannot stop lest I drop it and its contents.
At other times my joints are so sore that I find it difficult to press down upon my rubber stamps, sometimes I have to do this while standing above the surface; generally my chair.
Sometimes I cannot stand up, either my back will not straighten itself out or I have pains in my legs or feet; sciatica just finishes me off. None of which is ideal for a busy nurse, in a busy unit...
I can no longer lie on my right hand side in bed and if I lay on my left DG snores into my ear and keeps me awake. I don't sleep well on my back and people with ME/Fibromyalgia/CFS are not supposed to sleep on their stomachs. My legs seize and ache if I lie in a foetal position and my left hip goes into spasm for days on end.
My arms, elbows and wrists ache and keep me awake if I curl them up toward me. My sleep is non-restorative and leaves me feeling like I have been run over by a steam roller. It used to be a lot worse.
If I take my tablets on time and in the right doses I do get some relief, and then I think I am Superwoman. I look around at the devastation around me and try not to feel guilty.
I tell myself that I am doing my best and that in anycase it doesn't really matter. The housework will still be here when the boys have left home, in a few years time. Anyway, Quentin Crisp declared that "after the first four years you don't notice the dust!"
I notice the difference and despite the family being supportive and wonderfully patient; it does appear that it is me, 'The Mammy' who is expected to make the difference.
After my huge energy expenditure at the weekend (during the five mile hike) it's important that I take it 'handy' this week; allowing myself the opportunity to recoup. If I don't I will end up putting myself back into a place I do not want to be in.
I don't find the need to justify myself, I understand my condition and the effect that it has had on me. http:Unfortunately people on the outside looking in are unable to see what I see. Apart from the fact that the black pits around my eyes are a thing of the past and the fact that I have put on a couple of stone in weight; I look just the same as ever.
My five mile hike was probably easier on my aching body than traipsing around the National Ploughing Championship showground. At least my body was moving at a reasonable and constant pace for most of the time, instead of dawdling along very slowly and still for extended periods of time while looking at exhibits and waiting for other people to turn up. My body isn't able for that kind of abuse and painkillers were taken as a matter of urgency.
Maybe because I had consumed the pain-killers in advance of the hike,I was able to survive it. On the up-hill climb I had been ready to call it a day more than once; my thighs' on fire; pelvis creaking & groaning, lungs gasping for breath as I heaved my aching body higher & higher up the mountainside. Our guides were very kind and slowed the pace to allow me to catch up. I've been catching up ever since...
ME/Fibromyalgia is a chronic pain condition with chronic fatigue. It changes lives for the worst in many cases and just occasionally it can change things for the better.
Before this thing really got its grips into me I barely saw my family, I was always at work or on call. On my days off I was so tired that I lacked the energy to talk. I was prone to outbursts of temper and simply didn't have the reserves to change things. I was over-tired and under-weight,in chronic pain, stressed out and not myself.
Now that my body has decided to make this stop I am a different person altogether. I love my family and most of the time enjoy spending time with them. I have two dogs, a rat, a cat and a ferret; only the cat was possible before - they're more self sufficient.
My boys most certainly would not be participating in things like the scouts and gymnastics and the teachers in the school wouldn't even know my face. I would be better off financially though.
I used to dream of the day when I could afford to go job sharing. That day would never come, as I knew that I would never be able to afford to do it. It's just as well that we none of us know what the future holds, isn't it?
By the way I forgot to mention that the fourth reason for my blog is that I can let off steam! The only problem is that I didn't think it would take up so much of my time...
Luv Polly Px
You know;when I started blogging I had a number of reasons in mind;
- principally because I make (hand-crafted) greeting cards by hand; using a variety of techniques and welcome the chance to show them off;
- secondly because it gives me a chance to indulge another passion of mine, which is writing,
- I love photography and have really only started to be able to do what I have always longed to do, which is to take good photo's on a good camera. There's no point in having them if they don't get shown off from time to time!
I actually don't like the word normal because it infers that anything which lies outside of its parameters is abnormal. I personally consider that a better choice of wording is average.
--------------------------------------------
In terms of treating patients I cannot recall the many thousands of times when I have been asked "is it normal, nurse?" Most often they are enquiring about their pulse rate, temperature or their blood pressure. On the surface that is an easy question to answer; a simple yes or no would suffice; but, would it?
I have always considered that it is best to be truthful, while protecting the patient from startling facts which might upset them. It is a difficult question to answer, considering that there is no such thing as 'normal'!
Almost always I will answer, somewhat evasively, that it is what one would expect given their age, circumstances, etc., or that it is within expected parameters.
First of all I do not wish to be the person who eroneously informs the patient that in fact everything is not as it should be, or the person to tell the patient that everything is normal when in fact it isn't.
For most people the answers that I choose to give; when asked this question, is more than satisfactory. Only a very few want to know the intimate details of how their bodies fit into the parametres described as normal or anticipated.
I do not believe in telling lies, at least not intentionally. From time to time, like most people I might tell the occasional un-truth, generally due to misunderstanding or misinformation.
Unless I am having a bit of a laugh and playing a trick on someone I do not tell lies, it is not how I was raised and anyway, I can't do so for toffee! When there has been an element of deceit involved in some such plot; I will always apologize and offer an explaination myself to the recipient afterwards. I am normally forgiven quite readily.
-------------------------------------------
So far, the story to date is that I am a forty-something trained nurse; working in a specialised unit in an HSE Hospital, Somewhere in the Midlands. Due to ill-health I am taking a break to concentrate on the more important things in life, like my health and my family.
As an interest I started to make greeting cards and have been doing so for the past year. I have progressed so quickly in terms of skill and knowledge and am now able to sell my cards, for a reasonable cost.
During this time I have indulged my second passion which is photography. Since BJK gifted me a Canon Powershot digital camera have been enjoying including the occasional photo in my range of cards.
What I have discovered about myself is that while indulging my creativity my mental acuity has improved dramatically. I have good days and bad days, like most people; except my bad days really are bad days.
If I am short of sleep I suffer what can only be described as brain fog; a common complaint amongst the ME/Fibromyalgia/CFS community. On a good day, when I have remembered to take all my meds on time I feel like a million dollars. There is no consistency in my condition and I plan my life accordingly.
At last I am beginning to pace myself. In the past if I was a bit slow after a weekend off, it was probably due to copious amounts of alcohol and very little sleep for three days. Nowadays a glass or two of wine or not taking my tablets till late will have the same effect. If I forget to take my tablets I am doubled with pain, sometimes severe and other times so slight that I feel a bit like a junkie as I take my codeine; nothing else is effective.
I can no longer mash potatoes, so we have them boiled in their jackets. The skins carry the nutrients anyway. DG or BB will mash if they are around. My beloved Le Creuset Saucepan set is too heavy for me to lift without pain. Everyone knows not to get in the way if I am wielding it; from pillar to post and God help anyone that gets in the way as once in motion I cannot stop lest I drop it and its contents.
At other times my joints are so sore that I find it difficult to press down upon my rubber stamps, sometimes I have to do this while standing above the surface; generally my chair.
Sometimes I cannot stand up, either my back will not straighten itself out or I have pains in my legs or feet; sciatica just finishes me off. None of which is ideal for a busy nurse, in a busy unit...
I can no longer lie on my right hand side in bed and if I lay on my left DG snores into my ear and keeps me awake. I don't sleep well on my back and people with ME/Fibromyalgia/CFS are not supposed to sleep on their stomachs. My legs seize and ache if I lie in a foetal position and my left hip goes into spasm for days on end.
My arms, elbows and wrists ache and keep me awake if I curl them up toward me. My sleep is non-restorative and leaves me feeling like I have been run over by a steam roller. It used to be a lot worse.
If I take my tablets on time and in the right doses I do get some relief, and then I think I am Superwoman. I look around at the devastation around me and try not to feel guilty.
I tell myself that I am doing my best and that in anycase it doesn't really matter. The housework will still be here when the boys have left home, in a few years time. Anyway, Quentin Crisp declared that "after the first four years you don't notice the dust!"
I notice the difference and despite the family being supportive and wonderfully patient; it does appear that it is me, 'The Mammy' who is expected to make the difference.
After my huge energy expenditure at the weekend (during the five mile hike) it's important that I take it 'handy' this week; allowing myself the opportunity to recoup. If I don't I will end up putting myself back into a place I do not want to be in.
I don't find the need to justify myself, I understand my condition and the effect that it has had on me. http:Unfortunately people on the outside looking in are unable to see what I see. Apart from the fact that the black pits around my eyes are a thing of the past and the fact that I have put on a couple of stone in weight; I look just the same as ever.
My five mile hike was probably easier on my aching body than traipsing around the National Ploughing Championship showground. At least my body was moving at a reasonable and constant pace for most of the time, instead of dawdling along very slowly and still for extended periods of time while looking at exhibits and waiting for other people to turn up. My body isn't able for that kind of abuse and painkillers were taken as a matter of urgency.
Maybe because I had consumed the pain-killers in advance of the hike,I was able to survive it. On the up-hill climb I had been ready to call it a day more than once; my thighs' on fire; pelvis creaking & groaning, lungs gasping for breath as I heaved my aching body higher & higher up the mountainside. Our guides were very kind and slowed the pace to allow me to catch up. I've been catching up ever since...
-----------------------------------------------
I hate the way my body has been behaving and resent that my being able to do something normal is such a challenge for me. I am proud of my achievements, however, and am determined that nothing is going to stop me from making a success of this part of my life; not even my own lack of confidence!
ME/Fibromyalgia is a chronic pain condition with chronic fatigue. It changes lives for the worst in many cases and just occasionally it can change things for the better.
Before this thing really got its grips into me I barely saw my family, I was always at work or on call. On my days off I was so tired that I lacked the energy to talk. I was prone to outbursts of temper and simply didn't have the reserves to change things. I was over-tired and under-weight,in chronic pain, stressed out and not myself.
Now that my body has decided to make this stop I am a different person altogether. I love my family and most of the time enjoy spending time with them. I have two dogs, a rat, a cat and a ferret; only the cat was possible before - they're more self sufficient.
My boys most certainly would not be participating in things like the scouts and gymnastics and the teachers in the school wouldn't even know my face. I would be better off financially though.
I used to dream of the day when I could afford to go job sharing. That day would never come, as I knew that I would never be able to afford to do it. It's just as well that we none of us know what the future holds, isn't it?
By the way I forgot to mention that the fourth reason for my blog is that I can let off steam! The only problem is that I didn't think it would take up so much of my time...
Luv Polly Px
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