Osna ... Is mian raibh mé in ann teacht ar roinnt díograis ó áit éigin.

Sigh... I wish I could find some enthusiasm from somewhere.

I just can't find it anywhere.  The only time we've been going out this past two weeks seems to be for appointments.  I don't want to keep moaning, I wanted this blog to be upbeat and positive - but I seem to be failing miserably.  My depression is definitely out of control.

At home I'm trying to be positive for Mand and Beth.  Mand has been suffering greatly since she had the ablation treatment.  She didn't want it, but had to go through with it.  She's had both her wrists done too for carpal tunnel.  At the moment she's lying on the sofa and is finally getting some sleep.  Our sleep patterns are completely up the wall.

We have had some positive news.  Beth has been doing fab in her atheletics and Luke has got in at LIPA.  I will beat this, I am determined.

Ní dhéanfaidh aon ní Tá athrú, tá mé ag coinneáil dialann cacamas!

Nothing has changed, I'm crap at keeping a diary!

I really did want to do this daily, but I'm not going to get down about it - sometimes it's just not possible.  Yet again we've had stuff happening beyond our control.  Being diagnosed as diabetic is taking some getting used to, I have a lot of feelings about my past to try and deal with - not sure now is the right time, and am trying to pack them away in their little boxes in my head.  The whole not wanting to be like my so-called father is the biggest issue, but also trying to deal with the fact that my maternal grandparents were diabetic and me not knowing and then thinking about everything I missed whilst I was estranged from the family.  There is so much I don't know about and so much I missed out on.  But the past is the past and can't be changed.  There is no point dwelling on it.

I spent Sunday and Monday in a real bad way.  We are thinking that it was food poisoning of some kind.  I couldn't keep anything down or in - not even water.  Mand was an absolute star and had to look after me more than she should have to at this stage in my life.  I love her so much.  She just accepts what has to be done and gets on with it - however horrid it may be.

On Wednesday she had to have the hysteroscopy and endrometial ablation.  It scared the hell out of me.  I was petrified of losing her under the anaesthetic.  I didn't want her in pain from the procedure either.  She was so brave.  I watched the other women come back and they were all dozy and looked awful - Mand came round the corner sat up in bed and chirpy and shouting Hello Darling.  It was wonderful to see.  She has had a lot of pain, but managed to mask it in the hospital so I could get her home to look after her.  She has slept a lot, and now just has her normal period pain - not nice, but handleable.

Beth has had her first atheletics meet of the season and performed amazingly well.  She's already beaten her personal best at long jump.  We're sure she's going to be competing at county level.  She is amazing.  I've spent two evenings this week braiding her hair for her.  She reminds me of what I wanted to be like when I was her age.  She is going to have the most fabulous life.

Our seeds are surprising us by how much they are growing.  We have potato plants and garlic sprouting as well.  It's going to be a fabulous summer for fresh veg.  It's hard to believe that we are creating food, seeing it change before our eyes is such a privilege.

Tonight is going to be a very special night.  Mand and I are going to see Kate Rusby.  I hope Mand likes it.  We are going for a Thai meal beforehand - I know she'll like that!  Then tomorrow we are going to watch the Flower Parade - this I'm not looking forward to as much, as I don't want to run into past students at the moment.  It will be lovely to be with family, but I would like us to be left alone in our own little bubble.  We have such an amazing life when we are left alone, it only gets bad when the real world creeps in.

Now I'm off to finish making tutus for Dan and his mates at work.  They are raising money for an orphanage in Kenya that their boss visits regularly.  We can't do much to help, but we will do everything we can.  Despite everything we go through, I am so aware that there are people out there that are in a far far worse position than me.  I am so very lucky.

Bhruitíneach, athruithe, Béiríní agus an saol nua

Complications, changes, teddies and new life.

Well Mand had her hand done.  Huge bandage and she's in far more pain than she let's on.  She tries to hide it, but she can't hide it fully.  When the bandage finally came up (more out of curiosity to what her stitches looked like...) we saw the extent of the bruising.  Jeesh it's everywhere and looks really bad.  The stitches are pretty though, although I wouldn't use big black thread!  Trying to keep Mand from doing things, but that's even more tiring than trying to cope with poorliness.  But she shall not win.  I will make her rest!

The blood results have come back but I don't know what they all say.  They wouldn't tell us over the phone when we rang (like normally happens) so we had to wait for the doctor to ring on Monday.  He told me that the glucose and cholesterol results were really high considering I'd fasted, so that is going to be sorted first.  An appointment was made to see the nurse today, but she rang up and changed it to tomorrow night as she needs longer with me.  I think we are going to try and tackle things with diet first.  She'll go through the other results with me, and the BP, and the ECG.  

Finding it hard to accept diabetes.  It's a link back to the past that I don't want.  It's bad enough that I do have my so-called father's genes, I don't want his illnesses too.  My family have been good and reminded me about all the people on my mom's side that had diabetes - in fact it would have been quicker if they had told me who hadn't got it!  I know that it's a diagnosis, but it's not one I wanted.

Now let's move onto the positives.  New life.  Yup we have seed growth!!!  It's fantastic to see how quickly things have taken off.  The cauliflowers have sprouted, the onions are just starting.  Thyme is going well and the chives are just starting to poke through.  We have some sweetcorn tiny tiny shoots peeping at us as well.  When Mand went outside this morning, she found that something had been in one of the potato bags and pulled out one of the tubers.  We're not sure what it was, and why have they only pulled out the one?  We will have to keep watch!

And finally the teddy bears.  We actually sat and watched QVC because they were launching the new Charlie bears collection.  We did succumb to buy the limited edition offer.  We should get some money on Thursday, so we should be okay!  But anywho, life is too short to not have cuddly things.

Amhránaíocht Is maith don anam; gréine a bhfuil go maith ar an gcomhlacht agus glasraí atá ag fás go maith le haghaidh an bolg!

Singing is good for the soul; sunshine is good for the body and growing vegetables is good for the belly!

Such a lot has happened since I last blogged.  I will try not to bore you too much, but apologies if I do.

Monday I had the blood pressure monitor put on and was told that it was very sensitive and I had to keep perfectly still each time it beeped - every 15 minutes...  Not easy when we had to go over to Kings Lynn to see Luke's show.  Everytime it went off in the car I got an error message.  It was good to see how much some of the Academy had improved over the past year.  There was a gospel choir there called  IDMC who did a workshop with the kids over the holiday.  They were really good.  They tried to get the audience involved and singing - but they weren't very receptive.  When he asked everybody to get up and start clapping I felt bad at not being able to get out of my chair, but it didn't stop me from singing.  I just let rip and it felt good.  In the second half they did "Lean on Me" which is one of my fave songs, so I again let rip.  I had my eyes closed and just sang.  John came over and put the mic towards me, but I just closed my eyes and sang and sang and sang.  I didn't realise he stood next to me for the whole song, and the voices I was hearing over the sound system was mine and the choir!  At the end of the night I was congratulated on my voice by one of the choir members and told to keep it up...  The only thing that spoiled it was having a huge fit towards the end of the night.  I get very embarrassed to be sat there shaking and tremoring and having no control over myself.

Tuesday the sun shone again.  Absolutely glorious to be outside.  We went out as a family into Boston.  Despite the fact that I had the BP machine on and get buzzing and whirring every 15 minutes, we had a fab time.  We took our time and wandered around and then went to Asda and did the shopping and picked up some seeds and stuff. 

Wednesday we went and saw Pat and Ken.  Beth stayed with Ken and helped Ben shift a tonne of bark from the front to the back garden.  Mand, Pat and I went to Springfields and then to Sainsburys and then we went back and had a Chinese when Jack and Luke got there.  When we got home we planted up our veg and stuff and made a complete mess in the dining room!

Today I am suffering and have the blinking BP monitor on again as I had too many errors on the last one.  The error messages are all to do with irregular heart rhythms or off the scale readings.  I will be so glad to get rid of the thing tomorrow.  But tomorrow will also be a difficult day as Mand is having her carpal tunnel release.  I'm really worried about her and the pain she will be in, but we will overcome it.  We are strong.

Ar an drochuair, níl an titim i gcónaí tar éis léim...

Unfortunately, there's always a fall after a jump...

After the fabulous weekend and Monday is here and I am not too good.  I cannot get rid of the pain in my head - then again I haven't been able to get rid of it for weeks.  It feels like a really heavy weight inside my head just sliding from side to side, yet at the same time it is focussed over the right side of my head.  My vision is blurry - and I guess it isn't helped by trying to focus on the laptop screen.

It hurts to sit upright, so I'm sort of propped up with pillows but lounging back.  If I go more upright I get too dizzy and have to come down again.  I managed to feed myself cereal, but I missed my mouth more times than I got it in.  Yet again, it took more effort to swallow than I like.  With the aid of my walker trolley I have managed to get myself to the bathroom, but it takes time and I feel as if I'm going to pass out constantly whilst moving.  Once there, I have to sit and wait to build up the energy to come back to bed.

I've managed to drink, again dribbling everywhere and finding it a strain to actually lift the cup.  The weakness in both arms is annoying.  I'm used to the lack of co-ordination in my right side.  I know it's weak, I know I can't grasp things properly but I'm now getting a weakness in my left side too.  My body aches all over.  It is laborious to even breathe.  Everything takes so much time and so much thinking about.  Even the basics.  Cup moves towards the mouth, I need to tilt it, I can feel liquid in my mouth what do I do?  Okay need to swallow, and then repeat.  I cannot take anything for granted.

And why am I writing all this down?  Believe me I do not want sympathy.  I want to be taken as being just like everybody else, but I do want people to understand what a struggle everyday life is for me at the moment.  Mand and I were accused of being negative about everything a few months back and never looking on the brightside.  But I am being positive.  If I didn't I would go even crazier than I am now.  The very fact that I can celebrate the fact that I have managed to feed myself this morning and show it as such an achievement.  I'm not being negative by saying that this is only what I can do.  By saying it I am showing it as a positive.

I am grateful for being alive and being able to do things.  There are so many people out there that cannot do as much as I can.  I have had to come to terms with not being the person I was.  I will never teach again.  That is such a hard thing to accept.  I have accepted it.  My life needs a new direction.  My longterm target set with the CFS specialist is to be able to shower myself.  A tiny insignificant thing that so many take for granted everyday.  I have to build up the energy to be able to get into the shower and sit down on the shower stool.  I often don't even have enough strength to hold the showerhead.  I cannot raise my arm high enough to be able to aim the water at my back to rinse off.  I have to have Mand wash me and help me every step of the way.  I try to do what I can, but it is very little.  And after Mand helps me out of the shower cubicle I have to be wrapped in towels and sat down to recover before I can start the process of drying myself.  And then wait again before I can dress.  Or have Mand dress me which is more often the case.  This is everyday life.

Life is a struggle, I am determined to keep living.  We had plans to do so much, we are not giving up on those plans but having to adapt them.  I am not giving up.

Iontach an deireadh seachtaine iomlán gréine, solas agus gáire.

Amazing weekend full of sunshine, light and laughter

The difference the weather makes to my mood is shocking.  Having the sun shine on Saturday was some of the best medicine ever.  We got up and I wore my summer dress.  (Just waiting for Debs to pick herself up off the floor after reading I wore a dress...)  Having the sun on my arms was wonderful.  I would've loved to have been able to have run about barefoot on the grass, but being rolled around by Mand was just as lovely.

We went into Boston without an agenda or shopping list.  Well, we did want to pick up a feather duster for some of the older cobwebs in the house that don't have spiders, but we forgot it anyway!  We took it slowly and it was fantastic.  I enjoyed being out and about.

When we got back Mand rung her mom as we decided that we were going to kidnap her and Ken and take them to the coast on Sunday.  They both need the fresh air.  We don't know how long we have them for in this world, and we want to make their time as happy and fun-filled as possible.  Then my mom rang and since our last contact (Thursday) she had decided to put the house on the market and has seen the perfect bungalow for her Phil and the dog near Newmarket that they want to move into immediately.  They are so serious that Phil was already in the garage clearing out and my mom had started packing...  The estate agent comes today and my mom said she's going to tell him the house needs to be sold within the week or else...

After listening to my mom's [not sure what the word is but I want a happy jolly version of tirade] about the wonderfulness of the bungalow for nearly an hour, it was time for the football.  Mand and Beth have convinced me that I am a Chelsea fan when I didn't really have an affiliation before.  Unfortunately, the rest of my family are ardent Villa supporters.  The bating on Facebook had already begun, especially after Chelsea thrashed Villa 7-1 recently in the league.  Mand had her lucky Chelsea shirt on inside out (it has to be that way), her match bottle of honey beer, and the lungs of an opera singer!  I coped for the first half - and agree that the ref was blind and should've given Villa a penalty, but then I had to go and lie down.  

I didn't sleep as Mand was in fine voice with her frustrations with the second half.  So frustrated was she, that she got up to come and see how I was and go to the bathroom.  Sod's law has it that as she did this Drogba scored.  Chelsea then scored another twice and Mand started singing "We're on our way to Wembley" as she walked through the house.  I pointed out they were already at Wembley as that's where the semis were being held this year, but she said it didn't matter she can still sing it anyway!  Realising that she was now full of so many beans that the Mexican jumping bean factory would be contacting her for extra stocks, I got up and managed to half dress myself and got myself into the front room under my own steam.  Okay, it's only about 20 metres, but it's a huge thing for me.

To celebrate we decided to go out to the Italian in Boston.  Despite it being full to the rafters, they made room for us.  We had the most amazing Bruschetta to start.  The tomatoes tasted so fresh and there was at least 3 tonne of garlic mixed in.  I had lasagne and Mand had Spag Bol.  Usually we are more adventurous in our ordering, but I adore their lasagne as the pasta is homemade and there's always at least 7 layers of scrummyness and we knew that this would probably be the last time we came here.  When the blood tests come back, even if Coeliac isn't confirmed 100% I am cutting gluten out of my diet as I know it does bloat me and makes me very poorly.  But tonight we wanted normal pasta and we ate it in abundance!  What was also amazing was the fact that it only came to £25 for everything including the drinks!!!

When we got back, Mand showered me and used the exfoliating gloves to rid me of my rough skin.  She had to be careful because of the patches of raw skin I had from the ECG machine.  We're hoping that I don't scar.  She massaged my back to try and get rid of the knots and smothered me in the lemon flavoured body lotion from the Body Shop - the most amazing smell.  She looks after me so well.  She wanted me to feel like a princess and sleep well.  I didn't sleep very well, but I definitely felt like a princess.  Thankfully she did sleep for a while, until her carpal tunnel woke her up.  I'll be pleased when she has that fixed on Friday.

Even though the weather wasn't as sunshiney on Sunday we still went down to see Pat and Ken in Spalding.  I know it is hard for Mand to see the deterioration in her mom and dad, but we are determined to see them as much as we can.  Mand did a tip run for them with some green waste and then we headed off to Baytree so they could get some plants.  Despite wearing his shirt, jumper, fleece and coat Ken found it too cold so we couldn't risk the beach.  It was lovely spending time with them.  When we got back, Mand did another tip run and we then sat and drank tea chatting with Pat in the kitchen whilst Ken slept in the front room.  We picked Beth up from her dad's at 6:15 and headed home for an evening of family time snuggled up on the sofa together and chatting and TV half paying attention to!

Seoladh beannacht an ghrá, solas agus sonas.

Lá dearfach iomlán de rudaí deas

A positive day full of nice things

Today has been a good day.  Mand had her carer's allowance approved and paid for March, despite getting the figures wrong tax credits have been approved (just waiting on an amount), ESA have received all the paperwork and it's reached decision stage and we can see a way forward.  So much so, that we actually went and signed up with Motability.

This is a fabulous scheme where you sign up with them, they take your Disability Living Allowance and you get a brand new car on a 3 year lease.  You might think that that isn't a good deal, but it definitely is an amazing deal.  The DSA over 3 years amounts to £7347.60 and the car we are getting costs over £25,000.  Add onto that the tax, servicing and insurance for 3 years and you can see that we are definitely on to a winner.  As I am not allowed to drive anymore, Mand is fully insured to drive which means I have my own personal chauffeur!!!  We've joked about it already today.  What have we ordered?  A Vauxhall Zafira 1.7 Ecoflex Diesel thing in a dark blue colour.  We'll be able to fit the wheelchair in the back no problem, and have enough seats for running everyone round.

After going to the Vauxhall garage, we then went to see my Psychiatrist again.  I'd had all the bloods taken yesterday that he wanted (8 different bottles...) and I also had a 24 hour ECG with my 24 hour BP monitor booked for Monday.  My GP wanted me taken off the Venlafaxine as she was sure that was what had caused the massive rise in BP.  So now I'm on Citalopram, starting with a very low dose of 10mg a day for a fortnight to see if I have a bad reaction, and then onto 20mg a day for a fortnight before finding the correct dosage for me.

Mand and I went and had lunch at the Spirit of Endeavour and then went back into Boston to pick up my prescription before returning home.  Where was Beth?  She was in bed!  We woke her before we went out just before 12, but she wanted to stay in bed.  She texted us as we were on the way back to say she'd just got up (about 3...) and was having some rice for lunch.  She's now at her dad's for the weekend.  We miss her when she goes, but it's also good for me and Mand to have our time together too.  Far too many couples forget why they wanted to be together in the first place.  It's something Mand and I are particularly aware of, she has to be my carer but she is also my chosen partner and lover.  This weekend is going to be one of togetherness.

And that's the sad thing about today.  We should've been getting everything packed up and ready to take to Norwich tomorrow ready for our Handfasting on Sunday.  We are both sad that it isn't happening, but the hotel was not wheelchair accessible.  I wanted to be able to walk down the aisle, and that's not possible at the moment either.  We haven't decided on a new date as we are going to wait for my condition to stabilise.  We also need to find a new venue which is going to take time.

I'm not going to end on a sad note.  Today has been about positivity.  The weekend is going to be positive.

Seoladh beannacht an ghrá, solas agus sonas.

Mo teaghlach iontach, agus saol líonadh le grá.

My wonderful family, and a life filled with love.

Despite everything that has happened, I am happier than I have ever been.  Mandy is the most amazing woman.  She loves me for who I am and doesn't want me to change.  She copes with everything my illness throws at us.  She has seen me change from a confident kick-ass teacher to a speech slurring, immobile thing that can't even wash and dress herself.  And she still wants to be with me.

Then there's Beth.  She calls me mommy and loves to spend time with me.  She makes me smile and giggle when I'm feeling down.  She loves taking me out in the wheelchair and pushing me around.  She loves curling up on the sofa in front of the tv and snuggling up.  She loves playing musical instruments and having me sit and bask in her wonderfulness.  She is such an amazing 14 year old.  She copes so well with all my fits and hospital trips.  She is truly amazing.

I've also regained my family.  I now have proper contact with my mom and Phil, with my aunts and uncles and cousins.  I feel part of my own family, and part of Mandy's family.  Her mom and dad have accepted me and have become as close as my own mom.  I am so very very lucky.

Seoladh beannacht an ghrá, solas agus sonas.

Cén fáth an t-athrú a tharla i mí Dheireadh Fómhair 2009.

Why the change happened in October 2009.

The short answer is that my brain shut down.  I was under a neurologist at King's Lynn who sent me for an MRI to look for lesions to see if I had MS.  I wasn't able to go to work as I was feeling very weak and grotty.  Mand wasn't at work as she'd had a bad asthma attack a couple of days previously. 

The day in question I had decided to have a nap after Beth had gone to school.  I woke up just after 10 and my body was paralysed down the right side.  Completely and utterly.  My face had fallen, my speech was slurred and I was in a bad way.  The first ambulance crew came out and said that as I had an underlying condition being investigated my doctor would have to come out.  Mand explained that she had tried to call the docs but they were having one of their training days and couldn't get anyone, so the ambulance crew rang and someone was going to come out.

The doctor came out (not one that I had seen before) and said that I should be in hospital and called for an ambulance crew.  A different crew came out and said they knew why the first crew wouldn't take me.  The cottage we lived in had a door at the top and bottom of the stairs and was a very narrow staircase with walls either side - no way the stretcher would get up and down.  So, the crew called their boss to say that they had to get a firecrew out to take out the window.  Despite them having over 40 years of service between them they still had to ask their boss who looked like she was just out of school.  The boss came out and actioned the fire crew.

Now there were 3 ambulance crew and we waited for the firecrew.  By this time, my mom and Phil had arrived from Cambridge.  And Beth arrived from school.  Till my dying day I will never forget the blood curdling scream of "Mommy" that Beth let out as she saw the ambulance crew.  Thankfully my mom was downstairs to give her hugs and let her know I was okay.

The fire crew arrived.  And another.  And their chief.  And land sea rescue.  In the end there were about 12 firemen coming in and out of the bedroom, taking out the window and taking me out in a sling.  Not a pleasant experience.  From the inital call to getting to the hospital took over 6 hours.  And then I was put into CDU.

I hate the Clinical Decisions Unit.  I was just left there in pain and paralysed.  Mand stayed with me till about 8 and then Phil brought my mom and Beth in and took Mand to get our car as he then had to go back down home.  The pain got worse and worse until it was making me cry.  In the early hours of the morning my mom and Mand through a hissy fit and managed to get me some pain relief.  I didn't see the doctor till a lot later.

I was moved onto a ward where I stayed for the next week.  There weren't any lesions on the MRI so the neurologist said that I have CFS - Chronic Fatigue Syndrome.  This is something we are disputing.  Although I do have some of the symptoms of CFS, there are also a lot that I don't have.  I also have a lot of symptoms that don't fit the CFS diagnosis.  But more of that later...

Seoladh beannacht an ghrá, solas agus sonas.

Tosaíonn gach eachtra le coiscéim bheag amháin.

The post title means "Every adventure starts with one small step." And this is what I intend this to be. A big adventure, telling the story of my new life.

My blog is entitled "An aigne fánaíocht ar fán is ar fuaidreamh" which means "Mind is wandering like a lost soul". Which describes my state of mind at the moment... I don't know what I'm doing with myself. My life has been turned upside down completely since October, and I'm struggling to come to terms with everything. I shall blog more about what has happened to me later today, as I want to get this set up to start with.

Right, off to finish this off and to make things look pretty.

sheoladh beannacht an ghrá, solas agus sonas.