Tag Archives: stress

Christmas time!

I Will be doing very few Christmas cards this year. However it means nothing to what you mean to me, a card will not define our friendship any better, it won’t make us stronger and it won’t mean we won’t talk. However it will cause me more stress, and make me even more tired than I already am this year. Christmas this year has jumped out on me like a ninja on roller skates and I’m just not ready for it. I’m not in the mood for the tinsel, dusty decorations or even Turkey! I’m not being bah humbug… I normally love the run up to Christmas but this year the only thing I’m looking forward to is the band Christmas concert. The rest I could easily do without. Christmas seems far to commercial and the real meaning? Well your be hard pushed to find it anywhere amongst the glitter, tinsel and fairy lights. 

 

Last year I worked so hard putting up trees, decorating the house, making Christmas cakes and having people over that by the time Christmas came I felt so ill I didn’t want to know. In fact I spent part of the run up and then new year in hospital! This year I’m taking a step back…. I’ve done little cards, am not decorating the house and not having a tree. We will probably have a turkey dinner but if it was up to me I’d probably just have stew or pasta and I will go to the band Christmas concert cos to me that makes my Christmas. As for parties, gatherings and the rest…. Well it can be left. It’s not what Christmas is about.

One of my resolutions last year was to not be pressured into doing things that I know will cause me pain. Well it’s taken a year for me to actually do that and it starts at Christmas. So despite no cards, no tree, no decorations, no lights, no gatherings round mine with friends, late nights lots of food and things, it doesn’t mean I’m not celebrating and it doesn’t mean I think any less of you it just means I’m learning to take care of myself. It means I’m taking a stand. Just because someone says this is what Christmas is it doesn’t mean it’s how everyone has to do it. So I’m not bah humbug I’m trying to play a game this year and it’s to stay out of hospital! 

Merry Christmas to you all 

Xxx

More Stress

Today is monday. I find out that when mum was shouting about how ill she had been sitting worrying about me yesterday whilst I was at the concert she was actually out visiting a friend and shopping!

Not much I can say about that is it…. however all that guilt i was feeling and being upset was for nothing!. Im pretty cross that she obviously lied – If there is something I do not do is lie to her… I cant lie i always end up laughing infront the person anyway or giving the game away but to lie to me about that so I would feel guilty about going out? thats not right. 
Well We agreed a truths yesterday so Im not going to say anything – inside though im saddened. 
The arguments are starting up about band tonight now… if its not one thing its another. I went to go down to my studio but then got told no… when questioned i got the well i will have to come down there ! this was not the idea… I have a buzzer system for down there so why is that suddenly not useful? basically I cant do anything unless she is watching – i am going mad.

Anyway I went to band and despite a struggle I managed it.
I will say im suffering for it a bit today but I have also been to the dentist today to have my “real” tooth put in rather than the temporary ! (remember a few blogs before my holiday when I smashed tooth during seizure). anyway nice new shinny tooth now in. it was a bit of a trauma though so no surprising my head aches.

I will leave you with this poem. 

A friend like me. 


Please don’t be afraid of me 
I want to be your friend.
and if you get to know me
your rigid thoughts might bend
Thoughts that i am different
from others that you know.
I really am no different 
and this id like to show. 
I live and breathe and laugh and cry 
i love to play and learn .
I sometimes do things differently 
which can cause some concern.
You see, some say I’m special, 
i guess this much is true
but if you were to ask me 
i’d say your special too.
We’re all  little different
no two are just the same. 
Its really something wonderful 
there is no one to blame
When things don’t go perfectly 
and people get confused
they say things like “poor girl”
and other terms they use. 
Its ok if you look at me
and may not understand.
Its ok if you touch me
and even hold my hand
My like has many obsticals
More than the epilepsy that you know
but thats not what i dwell on
Im me, thats all and so….
I know that things may not
always go to plan you see
Sometimes i may fall down 
but I’m not just the beast you see
Please don’t be afraid of me
or tell me not to do 
the things that make me feel normal
and make life worth living so…
Please learn to be accepting
i want you just to see
how truly great and wonderful 
a friend like me can be.

Confidence at Gigs

Stress causes seizures too, and I was under alot of stress over this this past week, There were issues after I subbed for a band last saturday and because of this, I found myself spacing out most of the day and my big seizures well increased a little too. 

The rest of the week I went to KCCB on monday (mark wasn’t there but Kara wanted to come and see if she thought it was possible to sing so there was no probs with someone to go with). It was a lovely practice though hard. I had a lovely pressie from my friend Judi of this beautiful sparkly and purple bracelet… ive not taken it off except to shower and bath yet cos its so lovely.

Bracelet from Judi 


Tuesday was as per normal a bad day for me… I often suffer on tuesdays for the long and late night on mondays but coastal is so worth it. The next day I went shopping for ball gowns… I came up with a georjus red one however it had a stain so I didn’t buy it. I love the style though.We had to get home pretty quick as I was feeling really poorly and had oxygen on route home… I managed to get to bed and chill for the rest of the day.  Kara came round on thursday and we were going to the craft box… we got there though and there was a mass of children… we got our paint and left rapidly. I wasn’t feeling too good 15 mins later anyway so I’m glad we didn’t stay. I didn’t let on to kara though and we managed a couple of shops she wanted to do and then got home. the next couple of days (friday and saturday) I had problems with big seizures. I had 4 tonic-clonics in just one day, I was spacing most of the day too but that was least of my probs. I took it east and just chilled and had mostly pj days on the sofa with films and pussy cat cuddles. Magick knows if i don’t feel right and always comes for his cuddles. I really was trying to be good and rest as I had a concert at a bandstand with KCCB on sunday and really love their concerts. 

The rest paid off and I managed to feel ok to go to the gig. Judi was really lovely and was giving me a lift. Its always a bit scary when going anywhere with someone who you’ve not gone / been alone with before but I trust Judi a lot and she’s a kind person. I felt ok and was (still am) on my stronger meds which I always go on during a bad patch and so I was covered! I hoped. 

The gig went really well but was exhausting (as band and gigs always are) I find gigs are more strenuous as its constant playing and in a different environment. 
Judi dropped me off at the bandstand and went to find a parking  space. the first thing I found was that the bandstand was quite small for the band. The flute section was really tight and I panicked as where I was sitting there would be no way i’d get out in time if I felt a seizure coming on… if i felt it coming on at all (some are just sudden). I always like to be able to get out and here I couldn’t. There was no way round it though. The head of section in bands always sits on the end. Next to her was another lady who would never move in a million years so I just prayed hard that I would get through. Though gigs like this really do scare me to death. Music does make me forget and be normal but there is always that arghh thing especially in public and situations like this that makes me not be able to. 
As the pieces were played I was getting tired, making my anxieties worse. I was so glad when It was break time. I went and sat round the back of the bandstand after saying hi to mark. It was quiet and I wanted to try chill and I did. Mark judi and giles came over and auben sat with us it was all good. I was knackered and felt a bit odd but not too much. I got asked many times if I was ok and that non-defeatest part of me put on a smile and yep im fine. Im sure mark knew I was knackered and on the edge ha ha

This lovely picture was taken at that moment. 


Back: Mark, Front: Giles, Me (Jo), Judi, Albun


After break we had to start again and back into the cramped bandstand where I couldn’t get out! the second half went quite quick and It was good. I had taken my meds that I needed to at break and all went really well. The end of the gig and we packed up and sorted and then walked to Judi’s car which (she did tell me) was parked a long way away…. I didnt realise how far though. I made it but how I dont know ha ha. We had a good journey home. 


I got in and was exhausted. I put my Pj’s on straight away, grabbed a sandwich as I’d not eaten since 10 am and it was now about 6pm ! I sat and watched a film on my laptop but never saw much as I fell asleep. I woke at 8 and had a massive headache. I took some pills and went to get my things ready for the next day as we are looking after my nan and grandad this week so need to get up and go early as we need to light the fire and help them get up and dressed etc. I had a sudden drop seizure. I woke up and mum was there. I must have hit my head on something as I had a cut on my face. It was a little sore and bleeding. It was ok and wiped off the blood ok. I was so dozey and even more tired now mum helped me to bed and thats where I stayed. I must have fallen asleep again and woke up the next morning. (today!). 

Today has been a bit weird but ok. I ave had a headache all day but thats not unusual after a day like yesterday. I am really tired but that could be from either drugs or the manic weekend. Im happy though. Im sitting painting some glass work for my friend Linda. 

Thats it for now guys so say hi send me a message it will be good to hear your stories too. 

Cheerio !