Living with epilepsy can cause many challenges and pains, whether it’s from falling down when having a seizure or the injections needed to deal with the condition…
Penny, one of our incredible guest bloggers, shares her personal story about the challenges and pains of living with epilepsy.
Epilepsy, falls and pain…
I am writing this with one hand and one finger, as I have broken my ring finger whilst falling down after a petit mal and tripping over the door step.
My patience is wearing thin after four weeks. Pain features a lot in my life. I don’t want to take pain killers but trying to be calm and to do ‘things’ makes it impossible not to.
Why in this day and age haven’t we got a painkiller like in star trek, where they just put a syringe type thing with no needles to your skin and instantly …no pain? Bliss!
At least it wasn’t as bad as the last time I broke my finger, which was a while back, then I did a good job and had to have a full arm and hand cast.
The most upsetting thing this time was having to have my wedding and engagement ring cut off. Bummer!
‘No pain, no gain, literally…’
About 3 years ago I was sent to a Physiotherapy specialist as my joints were getting to be quite painful. Nurse Witton was lovely and said the swelling in my knees was Bursitis and that I had Osteoarthritis. I do have water retention, which doesn’t help.
She made an appointment with Mr Yousef to have steroid injections (Depo-Medrone & Lidocaine), in both knees. When I saw the size of the needles, I nearly passed out!
Anyway after a painful night, my knees and my other joints started calming down. I no longer ‘ran’ in my sleep and slept for more than 3 hours! Result!
I had these injections every six months. Then they stopped doing them at that particular clinic. The lovely Mr Yousef passed away. After a year without them I was climbing the walls. Also fed up as I couldn’t walk like I used to.
I had bought an electric trike as I had had a heart attack 10 years ago riding a two-wheeler. This was bliss and became my ‘legs’. It was also exercise so I started to lose weight, slowly but at least it was hope.
Me and my hubby Andy changed our doctors, who were so different and understanding from our old one that we wished we had done this years ago! The good news was that they did the injections at the our new doctors. Brill!
So now I have them every four to five months. As I am writing this I am counting the days down (26) until my next needles. Oh to have half the pain I have now! The downside of them is the top of my legs are fatter. I don’t really need this as I have always had a big bum!
But no pain, no gain, literally!
At the moment, I am having problems sleeping because of all the cramps in my legs and arms. Not good for an epileptic like me, as lack of sleep causes fits.
When I have had the needles in my knees the pain builds and then about midnight everything eases off and usually I can sleep, which in itself is bliss.
It is quite interesting the next morning as my knees are not as swollen and I can walk without that ‘little man knocking a nail’ in each one. It is good to walk a bit farther.
I have fallen on them quite a lot in my life and as I can’t have new knees (in case I fall on them), so this is the next best thing.
Sometimes you just need some time away…
A week after I broke my finger we went way on our hols. I was determined to do Archery and Rifle shooting (we went on a Warner’s holiday), so after a painkiller and getting well bandaged up, I was ready!
It was brill – I felt alive and normal!
Also there was a small swimming pool and I went in every day. It was a walk down into the water and nobody made a comment about all the bruises on my legs and arms. It felt so good to swim.
My body felt like it used to, except for a ‘swim’ bag over my left hand. This floated and I did one armed swimming. The best thing was running in the water. I loved it. I can’t walk very long now or run and this was freedom!
So amongst all the bumps and pain there is a window of life where sometimes you can forget what or who you are.
Our five days away was just what we needed. Got to wait until next year now, like most people, lol!
Epilepsy and pain…
How do you measure pain? There are the puffers, the screamers, the panters, the groaners, the face pullers and grimacers and, of course, there are the ones who let everybody know, all the while, how they are feeling.
I call these the loud-exclaimers.
We are all of these sometimes but it’s difficult saying where you are on a scale of one to 10. When you get up it can be worse and then ease of. Also after, say, pulling weeds, it can be arrgh! Then it calms down. Maybe it ought to be from Ooo to arrgh!
The ahhh moment when your pain killer kicks in is good and, for a while, your head clears and you can think what you can do.
It is now a week later, not been too good, but my head is not so ‘woolly’ and the pain in my hand has eased up.
With pain, we just need these moments of ‘thank goodness that’s eased up’ and then we can cope with life once again.