Where does the time go???

I can't believe its been 5 months since I posted :-( Time passes so quickly.

So where am I now? Well, the house has been sold underneath us, and we are STILL in the process of finding somewhere new. We've tried getting a mortgage, and its harder than people think with the "credit crunch" going on. Plus the area we are looking in is quite small. We will get there, but everything is slowing down now ready for Christmas. Having said that, we have 2 viewings booked for the new year already.

Health wise, I am much the same. I was diagnosed by the specialist as having Fibromyalgia as well as M.E. so its all in writing now. I was starting to see some improvement until the Landlord started piling on pressure for us to get out, and then the winter set in. With Fibromyalgia being similar to arthritus, the cold weather makes the pain more noticable. I tend to try and stay in the warm as much as I can. I'm still trying to walk etc as much as I can though.

I've been granted Disability Living Allowance :-) I finally got confirmation at the begining of this month, it was a long time coming. It is such a relief, as I am in the time of year where I use more taxis etc. It also means I'm allowed access to Motorbility now, so I could in theory get myself a car once I've passed my driving test.

Chloe is doing VERY well at school. Academically she is a year ahead of her peers, which is encouraging. She did very well in the nativity and carol concerts, singing with gusto. She is looking forward to Father Christmas bringing her MORE lego! She had a lego village for her birthday too. She was 6 this year, and is getting more and more grown up by the day.

So we are pretty much still plodding on. I'll post more in the new year.

Hmmmm.......... Worried now

We've had the report back from the accident in January. The doctor I saw at the time thinks I may have Fibromyalgia setting into my spine, hips and shoulders. :-( It kind of fits as the painkillers aren't working as well as they were. With all the pressure going on I'm feeling a bit low too, so its time to book a GP appointment.

We've been looking at houses, and have another 4 to look at over the next few days. Its a busy time, properties are appearing in the market daily. Si made me promise that I'd stop looking at houses during the week so that I don't get so stressed.

And there's only 4 more school days left till the end of the term. I am tired now, and can't wait for the lie ins, but wonder how I'll cope with 6 weeks of entertaining Chloe. She wants to learn how to tell the time over the holidays, and I think thats a good thing. We have a few educational games around the place, and I am going to try and use the opportunity to go through the things in the house and get rid of a lot of junk ready for moving.

I'm looking forward to moving somewhere to call ours, but not the stress involved in it. It looks as though much of the organising will be left to me, as Si is on a big project at work with a big client. This happened last time, and I think thats what contributed to the big flare up last year. I keep looking at items around the house that I don't like, or don't want to take to the next home. I just know I have to be sensible and take regular breaks so I don't over do it.

Gosh! Its been over a month since I posted

Whoops! It has been so busy here, its unbelievable.

June was a blur! In the last 5 weekends, we have been away from home for 4 of those weekends.

We went "home" for fathers day. I use it in speech marks as Swindon feels so much like home now. It was a very snap decision, I decided at 3-30pm on the Friday afternoon of the Fathers Day weekend. I managed to pack everything and we arrived at Si's mums at about 10pm. During the weekend we went to see my grandparents, as it was my grandmothers birthday the following weekend. It was good to see them, particularly as its been a while and Grandad has been a bit poorly of late. Nan loved her birthday present, a beautiful Portmerrion brooch.
I treated Si to dinner at our local Hungry Horse on the way home. It was busy but some lovely family time. Chloe actually tried brown/HP sauce. I was amazed!

The following weekend was Damian and Sue's wedding party. The party was amazing, so intimate and enjoyable. The food was exquisite, I really enjoyed that bit. Everyone looked like they were having a great time. Here's a pic or two:





Also, huge thanks to Jen for having Chloe so we could enjoy an evening on our own. It had been a while. Jen and I went for a lovely lunch together in House of Frazer in Reading the following day, I totally recommend it. We chose the Afternoon Tea, it was sandwiches, tea and scones for £6-50 each . We also tried Krispy Kremes, something I won't be doing again in a hurry. They were OK, but VERY sweet. Not really worth the hype in my opinion.

The following weekend was SUZANNE VEGA!!!!!!! It was hard going, but so worth it. We left here really early, and got Chloe to Amie's for about 11am. Chloe was totally settled with her aunt and her cousins. Chloe was taken to Worcester by train and taken to see Shrek the Third. She was so well behaved all weekend, I was so relieved.

Our weekend was amazing but tiring. We put Jen on the insurance for the car, it was so worth it. It only cost £35 or so, but meant we could all take turns. It was such a long drive, but didn't take as long as we thought. We avoided the M6 and the roads were clear. The hotel was fine, cheap and cheerful. There was a problem with the booking, but it was rectified quickly. We settled in, had a cuppa and changed, then went off into Liverpool.

I drove into the city, and parked in what I thought was the right car park. It wasn't! We got a cab over to the Philharmonic Hall, and found an excellent family run cafe for dinner. £3 for an English breakfast and a cup of tea! It was cooked excellently too, and the cafe had a real family feel.

The Philharmonic Hall was beautiful. The outside was very grey looking, lots of concrete etc. Inside it was stunning. Very art deco, with lots of character. In terms of disabled access, it was OK. There was a lift available to the car and auditorium. The staff were helpful, but not necessarily friendly.

The gig itself was amazing! The support act, David Ford, wasn't my taste, but his approach was interesting. He was using equipment to sample music and repeat it, so he could build up a sound/song. Most of the lyrics were angry and shouty, so not my taste, but the concept was good.

Suzanne was amazing! She came on at 9pm, and played for an hour and a half! There were 7 tracks played from the new album, with a full band. Many of the old favourites were played, including the rarely played Rosemary, one of my all time favourites. There were a few that weren't played that I wanted to hear, Maggie May and Calypso. Suzanne was wearing a fabulous pair of shoes that she herself were beauty and crime. She looked great!

After the show we met up with some "towies" (fans on www.suzannevega.com) and we were escorted to meet Suzanne! She was even better in the flesh
Please excuse the really bad pic, but the camera is on the way out :-( On the left is Suzanne, Me in the middle and Mike Viseglia on the right, the bassist in the band.

We had a brief chat, I told them what I thought of the new ideas on the album (being a musician) and that the shoes were fantastic. She seemed so genuine and happy to hear the fans comments.

We got back with no problems, even though it was quite heavy rain on the way home.

The following weekend was very stressful! We use freecycle listings, and had managed to get hold of a high sleeper bed, and intended to use it in Chloe's room. On the Sunday we tried to put it together. It was reasonably easy to do, but was difficult in terms of it was quite heavy and cumbersome to put the bed part on as you had to lift the bed base over the top of your head. IT was a two person job, so Si and I worked together on it. Once we put it up, we realised it was too tall, and that C would be able to reach the light fitting. Si had been feeling a bit rough all weekend, and as we took the bed back to pieces, he started to get chest pains. We were both petrified! He sat down for a while, then phoned NHS direct, who immediately sent out an ambulance. Si was checked out thoroughly, an ECG done, and the consensus was that he had either pulled a muscle while putting up the bed or had very bad indigestion. We felt awful that we had had the ambulance service out, but relieved that it was nothing serious. Si has been referred to a cardiologist as a precaution. Thankfully we have private health insurance, so his appointment is in the next 2 weeks.

And so to last weekend, where we went "home" to celebrate our parents birthdays. Si's mum is 80 at the end of the month, and my dad is 57 today. We bought a birthday cake and had a takeaway evening on Saturday. We went to see Shrek the Third as a family too. I found it hard to pack this time around, I think the going away so much has really taken its toll.

Its been quite hard in the last month. Our busy shedule has left us all tired and worn out. We also found out that our Landlord has decided to sell our home. We are still thinking about what we are going to do, but are looking at new homes to buy. It also means that I have to keep this house in showhome standard, something I'm not very good at. And with the summer holidays looming, its getting harder.

There is good news about Chloe. She has completed her first sports day, we have had her school report, and she has made excellent progress. Term finishes next week, and so ends her first year at school. She has excelled all our expectations, becoming more independent, sociable and academically gifted as the year has gone on. Last week the class performed their first class assembly, it was fantastic. We recorded it so are now busy with our reception class DVD factory!

Health wise, I've been up and down. I've had 4 coldsores in as many weeks, so I have ended up on medication for it. My other symptoms have been up and down. I have decided to take some immune boosting vitamins for a while to boost my system back up. I have an appointment with the specialist next week, and will be discussing the possibility of a fibromyalgia diagnosis too, after a private medical for an insurance claim following a car accident in January. If it does happen, I'll deal with it. The pain has changed recently, and I am concerned.

So that's the last month for us! With the School holidays looming, I'm looking forward to lie ins and lazy days, bliss :-)

Its all catching up with me

And finally, some photos :-)

The one of the three of us is when I was symptom free


The one of Chloe and I is one of my favourites

Yesterday I managed to do quite a bit, but boy do I feel it now! My shoulders ache, my back is so sore, and my feet are swollen.

I got the contract to the letting agency yesterday, that was kind of desperate. I wanted it done so that I didn't forget about it. I knew Si would forget so knew it had to be my priority, as it is the roof over our heads. I managed to get up the terribly narrow staircase to the second floor office, and paid up the contract fee. I have no idea how they propose to help more disabled people, the office was so cramped that you'd never fit a pushchair or wheelchair up there, thats not without the logistics of getting it up there in the first place!

Then I went shopping! The sun was shining down and I was just gently ambling across town.

I ended up getting a cab back from town, and I was shattered. I did get an hours lie down with Chloe while we watched Over The Hedge (again! *groan*) which gave me the energy to carry on last night, but now I feel mentally exhausted as well as physically. As it says on my coffee mug: "Todays Agenda...... just get through it " I have my porridge and coffee here, then I'll go upstairs to just chill out and read my book.I would reccomend this one to every M.E sufferer. Its written sympathetically and informativly without being too much to take in. I can well believe it will be one of those books that I dip in and out of all the time once I've read it all the way through. I know I won't be able to read much before I feel sleepy, but I'm going to make the most of the peace until 3pm comes :-)

I finally got somewhere today

I should be jumping from the rooftops. Today I have achieved so much.

I took Chloe to soft play with friends, we stayed for lunch. The food was good, particularly for one of those places. Chloe enjoyed the play and was dissappointed to leave.

After that, we popped to the local garden centre. It was an impromptu visit, but very useful. I got some petunias to replace slug eaten seedlings. I got a few odds and ends too, and looked forward to an afternoon in the garden.

I managed to plant up all the plants, tidy up the pots, and chop back some overgrown plants at the side of the house. The feeling of accomplishment was amazing. It took 2 hours, but I can see exactly what I have done and how pretty it all looks.

So after all my hard work, Si bought dominos for dinner. We had a half price offer code so got a huge order for not a lot of pennies. It was a lovely treat for a hard afternoon of work.

So all thats left now is to sign the house contract for another year, and thats a good day for once.

M.E + Autistic child + half term = huge disaster

The title says it all really! This week has been half term, and has been hellish, on a personal level and on a M.E. level.

I tried to plan to do something every day to lessen the boredom, not taking into account the exaustion levels. On Tuesday, we went to Soft Play with some friends then on to the outlet village for lunch. The play was fine, Chloe left me in peace while she played and I rested while chatting over coffee with friends. Lunchtime was reasonable too, Chloe ate well and behaved. She was a mare while we shopped though. I did compromise and bought her 3 new story books, good for using during rest time. I was shattered physically afterwards though, so the story books came in particularly useful.

Wednesday was reasonably ok, we went for lunch at Pizza hut with Katy and Sophie. The restaurant was heaving! It was quite difficult to move with the walking stick around the buffet tables and to the toilets, and also the disabled toilet was out of order. That made taking Chloe to the toilet a bit difficult as I find it so hard to lift her now, as she is quite heavy! The food and company were good though. Afterwards, as it was pouring with rain, I went over to the supermarket and bought Chloe Over the Hedge on DVD. What a godsend! I was starting to get so fed up of Flushed Away, Happy Feet and Cats and Dogs. Its quite entertaining on an adult level too. I could at the moment quite happily sit through it.

Thursday was tough. Chloe was in a foul mood, it was pouring with rain, I was in pain, and the housework was piling up. I'd made myself a list and wanted to just get on with it. It seemed as though every time I got up to do something, Chloe wanted attention, and she wanted it NOW! At one point she accidentally kicked the laptop, and I went supersonic at her (not my finest hour) then burst into tears. It was like that all day. Looking back, knowing what I do now, it was the last exhaustion before I finally gave in. I hated thursday, I spent most of the evening upset in tears. Si came to the rescue with Kentucky Fried Chicken for dinner, and an early night was called for.

Friday was strange. I woke at 4-30am desperate for a drink and coughing. I'd also got the start of a coldsore, and a headache with the feeling of someone trying to drill a hole through my skull above my eye, a very strange sensation. I tried to sleep it off, but by 6-30am it was turning into a migraine. I took everything I could, told Si to cancel Hydrotherapy and I went back to bed, drowsy from the migrealeve. When I woke again at 10-15 am I felt a bit better, and although I realised I should really stay at home, agreed we'd carry on with the plan of going to see Jen in Reading for her birthday.

It wasn't too bad a day out, we went shopping and out for lunch, where Chloe was well behaved. I managed to get an outfit for a wedding we are invited to later this month, and we got an idea of what Reading is like to shop at, having not been since we moved here a year ago. I'd definatly go back for the day, probably on my own though.

And so to this weekend. We have been pottering around, I was quite tired yesterday so I had been resting upstairs and reading a lot. The book I'm reading now is facinating, Living With M.E. by Dr Charles Sheppard. I hadn't realised I had so many issues with brain disfuntion and core temperature control until I read about it. My condition makes more sense now I'm reading about it in black and white. I'm finally understanding WHY my body is all messed up and what I can do to help myself. Certainly porridge every day is helping my core temperature control greatly.

But for now, I do feel like yelling "Roll on Tuesday". I have so many jobs to do that are so much easier without her around, and my body prefers the school routine as I can sleep while she isn't here. I dread the summer holidays, but this week has taught me the necessity of regular breaks and sleep patterns, along with the need to ask for help from others more. My friends are so willing to help, I just have to ask.

For the rest of the day, I plan to potter and eBay stuff like crazy, to raise some pennies for an expensive month. Not only is there the wedding, there are many birthdays and the Suzanne Vega gig in Liverpool on the 30th. That is Si's fathers day present from me, and it looks to be a fab show with Suzannes new material being released next week. I can't wait for the CD to arrive.

So off to the grindstone I go.......

Is it Monday already ??

Where did the weekend go? I seemed to have blinked and missed it.

We've had a good weekend, all things considered. Its been busy, but well worth it. On Saturday we watched a steam train pass through Swindon, not something you see every day. It was quite ironic and special, seeing it in the railway village area of town. It was a long and somewhat tiring day though.

Symptoms wise, I was a lot better on Saturday. I was able to drive and was reasonably comfortable. The tiredness seemed to hit me (pardon the pun) like a freight train. It was so difficult to stay focused in the evening, I ended up just sitting and relaxing.

Sunday seemed full on, even though we didn't get up to much. We all made it to church only 5 minutes late (a personal best for us) and it was lovely Mike leading worship. Our church have sponsored a boy in the Philippines, and Chloe drew a picture of the boy, Joshua, and of all the letters she wanted to send to him :-) I think its a fantastic idea, and look forward to helping Chloe write letters to him.

After church we popped to the outlet village to get Chloe some trainers. After we did that, we took a walk around the farmers market outside. There was so much to see and try. I bought a few bits, and have the intention to try some more sometime soon. By the end of it though I was getting very tired and weary. I ended up with an afternoon nap, as I was so exhausted.

Sunday evening is always a busy time here. I use the time to try and get ahead for the week. Last night my brain was so addled I couldn't think straight. I hate it when I get like this, its so frustrating. In the end I left Si to deal with the school bags and prepping things for the week ahead, and went to bed early with a diazapam.

This morning was fun......NOT! The GP surgery messed me around last week, and it ended up that I had to book an appointment to get some medication this morning as I had ran out. I have been feeling run down a lot and wasn't sure if the symptoms were hayfever or summer cold, it turns out its hayfever. At least its sorted now.

I did my bit of shopping, and came home. This afternoon turned into a blur as I was online for most of it, chatting and reading email. I really should be packing for the weekend away, but then when do I ever do what I'm told.

Tonights plan is to work through the mid afternoon slump I'm feeling now, get through dinner and bedtime routine for Chloe, then collapse in a heap after a shower. I don't intend on going anywhere, but all my good intentions usually end up being thrown into the wind.

Friday 18th May - this is the day

So here it is, my diary. I've started this to give me an idea of my recovery, and to give others hope.

Friday 19/05/2007

Not a good start to the day. My spine clicked at 6 this morning, and it seemed to get worse. The pain was awful, a diclofenac and 2 paracetamol didn't really touch it.

Later on it got better. Mark O'Donnell was broadcasting from Lydiard Park, (www.bbc.co.uk/wiltshire)so we took a little wobble (on my crutches) to go and say hello. I was interviewed on air :-) It was a fabulous experience, far better than any pain relief.

This morning got better. It was our regular ladies lunch day, and I got some good bargains at the outlet village. I got a scooter from the mobility area, and coped much better than if I had walked. It was quite tough getting round some of the stores though, the aisles are not quite wide enough. I got what was needed though.

This afternoon I felt quite tired, but battled on. Driving may have been a bad idea, not only the tiredness, but I got the wrong shoes too. I had to go and fetch more meds from my surgery ( a whole other story) Dinner tonight was curtosy of Si, so at least I didn't have to cook.

Now its 9-30 and after a glass of cider I am feeling shattered. Tomorrows plan is to go and see a steam train, hopefully it will all go to plan.