For the record I and everyone else didn't decide to get ill, this is not an easy way out of working (in fact I work harder at my business than I did before I got ill) this is not an easy illness to live with, WHO would ever want to be in pain every single day, ALWAYS tired and living off of a cocktail of drugs. Never leaving the house for fear you might not be able to walk back (my knees are the worse part of my illness but this changes as just as I get used to a pain WHAM I get a brand new one to knock me out). I ADORE my family and friends but its not that I don't have the time for them I simply don't have the energy for them but ......................I WANT to!!!
Understanding Fibromyalgia
An open letter to anyone who has a fibromyalgia patient in his or her life.
By Karen Lee Richards
If you are reading this, someone close to you lives with and suffers from fibromyalgia (FM). Since
FM is invisible, many find it hard to believe that it is a real illness
or that anyone could really hurt that much all the time. Unfortunately,
this is one of the main reasons that fibromyalgia is so often
misunderstood, misdiagnosed and not properly treated.
Fibromyalgia is a central nervous system disorder that has three primary components: pain, fatigue and sleep problems. (1) Pain – The pain may vary in intensity and location, but it is present most, if not all, of the time. (2) Fatigue – The fatigue is not like the tiredness you might feel after working too hard or overdoing it on a sports field. It's a pervasive, all-encompassing exhaustion – like someone pulled the plug on your energy source. (3) Sleep – The person with FM usually has difficulty sleeping. And even when they do finally sleep, they never reach that deep REM stage of sleep where the body refreshes and restores itself.
The root cause of fibromyalgia remains a mystery,
however, it is usually triggered by some kind of trauma to the body,
such as an injury or illness. In some cases, it can also be triggered by a severe emotional trauma. Regardless the source, FM devastates the life it touches. Unrelenting
pain and fatigue reduces a person's ability to concentrate, perform
daily tasks, work, socialize, exercise and sleep. The more severe the symptoms, the more incapacitating it can be. Fibromyalgia often leads to depression, isolation and loss of self-esteem. Sadly, people whose FM is poorly controlled may also be at increased risk for suicide.
There are four main things someone with fibromyalgia needs you to understand:
1. What they are feeling and experiencing.
If you have a difficult time imagining what it must be like to live with the pain of fibromyalgia, I'd like to challenge you to try an experiment. Take
a wooden clothespin – the kind with the spring that works by pinching
one end together and clamping the other end to the clothesline – only
instead of attaching it to a clothesline, clamp it to the end of one of
your fingers. Now go about your business and see how long you can leave it on. While
you still have the clothespin attached to your finger, try to imagine
how it would feel if you knew you couldn't take it off when the pain got
to be too much. What would it be like to have that non-stop pain all over your body? Now
think about what it would feel like to have the flu at the same time –
the kind of flu where every muscle in your body aches and it takes every
ounce of energy you can muster just to drag yourself out of bed. Finally,
imagine that the pain and fatigue doesn't just continue for a day, or a
week, or even a month, but goes on for year after year with little hope
that it will end. If you can imagine that, then you have a small inkling of what your loved one lives with each and every day.
2. What they are not.
Fibromyalgia is not a psychological disorder – it is an all too real physical illness. Those who have it are not hypochondriacs; nor are they lazy, overly sensitive or just trying to get attention. And they are not simply depressed. Although depression may or may not accompany FM, it is not the cause of it. The percentage of people with FM who also have depression is no greater than for any other chronic illness.
3. Every fibromyaglia patient is different.
The differences in FM patients exist on a couple of levels. One is the severity of their symptoms. While
one patient may be able to continue working, another may be severely
disabled and in some cases, even confined to a wheelchair. Just
because you may know someone else with FM who is functioning fairly
well doesn't mean your loved one is faking or not trying hard enough. It simply means they have a more severe case.
Another big difference is how various treatments options work. What helps one person with FM doesn't necessarily help another. Also,
people with FM tend to have a lot of sensitivities to medications, so
it often takes much trial and error to find something that will help. We
find that what works best for most FM patients is some combination of
medication, gentle exercise, lifestyle changes, and often some kind of
complementary treatment like massage therapy, acupuncture, supplements,
etc. Unfortunately, it can take a long time to find that ideal combination.
4. What you can do.
The main thing your friend or family member needs from you is your understanding, support and encouragement. They know you can't take their pain away. They just want you to listen without judging them and let them know you care. Often
people with fibromyalgia have told me that the emotional pain of having
loved ones question the validity of their illness or accuse them of
just being lazy is, in many ways, worse than the physical pain they have
to deal with. They already struggle with feelings of
guilt because sometimes they can't “be there” for family and friends as
much as they'd like to be. Try to reassure them that you care about them for who they are, not just what they can physically do for you.OH and (just a few) samples of things that might help.................
• Wash his car and put a little note inside for him to find later. (#8)
• Don’t make her feel guilty about things that she cannot do. (#14)
• Ask, “Do you have an errand I can run for you before coming over?” (#21)
• Withhold from sharing every “cure” you’ve heard of for his illness. He’s bombarded with cures and needs you to be his refuge from that. (#57)
• Don’t say, “You look great!” If she does, it invalidates the pain. If she doesn’t, she knows you’re lying. Either way you can’t win. (#109)
• Watch for local events that may bring a bit of joy to your friend’s life, and rent a wheel chair if necessary. For example, would your friend love a cat show, a harvest festival, or a local parade? Do something out of the ordinary. (#195)
• Clip cartoons that will make her smile. (#304)
• Learn how to spell and pronounce the name of your friend’s illness. It’s courteous. (#321)
• Make her a CD of inspirational music that has gotten you through tough times. (#465)
This is a small selection from Beyond Casseroles - 505 ways to Encourage a Chronically Ill Friend.
I will TRY and be more positive in my next blog.
TTFN!!
but without the ability to change anything as the characters are all the same (my lovely family) but the day starts the same and ends the same there just might be a few different conversations each time, however in my case as I can't always remember what I've said from one minute to the next I do have a very BIG tendency to repeat.
and then I head upstairs to rest in bed, strange thing about my body I seem to be unable to curl my body up now.
Anyway I found a great site (and as it comes to my memory as I don't read my blogs I might be repeating myself if this is the case just ignore me and smile sweetly as my family does) Family Investments do great postcode checks on areas, costs of living etc etc. So this is what I got for UB10 (where I am now) NR15 (Norfolk/Long Stratton) & PE23 (Lincs/Family)....
And ............... I only had to wait over a week for the appointment because I didn't feel I could take an emergency appointment.
but pot kettle I have yet to SEE a GP's receptionist smile!!
Now my hair please please if you know me personally never EVER let me go Brunette again< I do this every year and then it take me a packet of peroxide and 3 different shades of Blonde to finally get a so so shade of Blonde. However last night I was yellow not just yellow but glow in the dark yellow!
then the next morning after scaring myself with my image we have mirrored wardrobes at the end of our bed, I hit the dye once again (after sending out hubby in the rain to get it of course).
I just don't have the waistline or the perfect makeup lol. Hubs LOVED the colour slightly worried about his taste and also about his eyesight, anyway he headed off to work and I did another hair dye. Medium Blonde this time that is still really light but isn't yellow and isn't white so there's a plus!! 
FUN what is fun...
I had a brief romance with a man that had a Cadillac (loved the car possibly more than the man) obviously as a grown up I now don't (or do) understand why he would want to be with such a young girl but as a young girl you get flattered by the attention. But for most of my teens 14 -18, I dated the same boy (on and off) who as well as me seemed to date the whole school too and hmmm most of the Scilly isles. (if you are reading this and its doubtful you would, YOU broke my heart and made me think all men cheat, for the record they don't)I remember being so excited about going to a nightclub for the first time and I was 18 then (strict Catholic childhood, well loving but still strict, oldest of 3 girls I was the one who made it slight easier or harder?? for my sisters.
we still remain close (not that close as we're both married) but I know he still has my back. But with a hugely messy divorce, losing my house, worrying about the kids and I was married for 12 years and with my ex for 14 years despite the year break it was a difficult time for me and the relationship didn't survive. So I was a single mum again at 32 with 4 kids the youngest being 4 months old but I also grew into the person I am now, strong, determined and a tad too independent. A problem for me nowadays as I can't do anything for myself.
