Murphy's law

I didn't want to get out of bed this morning and perhaps I shouldn't have. What could go wrong today has gone wrong. It started with the Christmas tree lights. They were working fine Thursday night when I put the tree up. Annoying..but easily fixed. Checked the fuse in the plug then the fuse bulb..that was the problem. Had a spare one, so easily fixed. Then the heating, or rather the hot water. The weather has turned very cold so I have had the heating on today. The hot water isn't working though when the heating is on. Probably a faulty valve. Rang the repair department at the housing association and was told that someone would contact me to make an appointment for this. Will be Monday now as repairs are not done at weekends except in an emergency. I can cope with that. What I can't cope with is the incessant phone calls I have been getting today...every 10 minutes or so. They have been from an automated service with no dialogue, just an annoying beep, beep, beep, beep,beep, Aaaarrgghhhh!!!!! The phone has been unplugged until the morning.
On a more positive note I have managed to get all my Christmas cards finished. Just got to address and post them. I am tempted to pack away my Christmas craft goodies, but if I do that you can guarantee that someone will get in touch wanting a card made.
Just got a couple of pressies to buy and then that will be my shopping finished...except the food of course. Not too much of that to do....the freezer is fairly well stocked and it will only be me and my 2 youngest boys for Christmas day. They are both working Christmas eve and boxing day.

The saga continues....

My health continues to get worse. Some of it is probably due to the cold weather. My muscle and joint pains seem to be increasing, and my fingers and feet are swelling more often. I went to see the doctor again...not the one I have been seeing.....she wasn't available. I have now had to stop the latest medication in order to be tested for a stomach bug, which apparently is very common, most people don't know they have it as it doesn't usually cause any problems. This bug could be causing excess acid which might account for the chest pains, so the doctor says. I go for a breath test at my local chemist at 9.30 next Monday..... 9.30!!!!!...I don't do mornings! It's not too bad though and might solve the problem. I can't have anything to eat and can only have water to drink for 6 hours before...hence the time. The test seems quite simple.....I tablet....then breathe into 2 tubes....wait 15 minutes then breathe into tubes again. If it showing that I have the bug...... a course of 2 types of antibiotics....problem solved. Now I don't mean to sound pessimistic but......the doctor has has given me more of the medication and put them on repeat for me to be taken if and when I need them. Another case of wait and see.
The saga of the replacement windows continues. The manager has been out to see me and replaced the broken one, and given an apology for the damage done to my garden. The housing association have not been so forthcoming. After a few missed calls and left messages i finally managed to talk to the refurbishment manager. She is sending a surveyor to look at the work. The thing that has really got me spitting feathers is the fact that the window company told me that the cladding over the old wooden cladding was a temporary measure as they would be removed and the walls re plastered round the windows when the refurbishment takes place. The housing association has today said that this is not the case..the windows are staying as they are!!! I am totally gobsmacked by this. It sounds as though it is a case of passing the buck. as you can probably imagine..I AM NOT A HAPPY BUNNY!!!!! I am going to contact the window company and get.... in writing.....why the windows have been done as they are. If I get no satisfaction from housing association on the matter then I will be kicking up an almighty fuss...local papers and all!!!! OK... rant over for now, and I make no apologies for becoming a grumpy old woman!

New windows...

The last 2 weeks have been a nightmare. The estate I live on has been taken over by a housing association and is being refurbished. My house is due for modernization in 2009. The work is taking some time, but the company which fits the new UPVC doors are ahead. That meant a new front door..but no back door. When I queried this I was told it was because the layout of the new kitchens might mean an alteration in the floor level..hence the reason for no back door. No problem..I can understand that. Last week I had new UPVC double glazed windows fitted. BIG problem!!!! The old windows were taken out and the new windows fitted with cladding partially covering the original internal window frames!!! Why????? The old frames will be removed and the walls re plastered when the house is refurbished. What a waste of time and financial resources. The kitchen window was 3 inches too short and they've put cladding over my newly plastered and tiled window sill, even though a surveyor was supposed to have measured each window. What surveyor? I haven't seen a surveyor..unless it was the woman seen walking round the estate with a clipboard. The outside tiled bedroom windowsills have been damaged and loose broken tiles wedged in under the new frames, positively dangerous in my view, and one of the windows has a lovely big crack. To top it all the workmen plonked their heavy tool boxes on my front garden and proceeded to trample all over my plants. When I pointed this out to them I was told not to worry about it..plants die at this time of year anyway. Unbelievable!!!! These are just a few of the complaints I have about the work. I have been seething and cleaning up the whole house. The results of that saw me in bed the best part of 2 days..I was exhausted. A stern letter has been written to the window company and also the housing association. Window co. has been in touch and taken photos of the work. I'm still waiting for a response from housing....but I'm not holding my breath.
To console myself I bought some new stamps for my card making. shouldn't have really..but what the heck.....and I found a wonderful craft blog. "Fred, she said"..Tracy Miller..her designs are wonderful and she puts some lovely stuff on there for downloading. Any crafters out there.... check it out.

I'm drowning...in paper

Well the weather has definitely turned. Although we get quite a bit of sunshine the cold winds are here and it makes it seem even colder. It's been a topsy-turvey couple of weeks. I've been feeling very low and I've not had many good days lately....probably has something to do with the clocks going back one hour. It is dark by tea time now.

Last week I received a cheque from the DWP for the princely sum of £14. This was for income support that they owed me from the date I claimed, which was the end of September. It turns out that I have been entitled to this benefit for the last 2 years...but they don't tell you what you are entitled to unless you specifically ask them and make a claim!!! I'm not complaining though; an extra £3 a week is not to be sneezed at. This extra benefit has meant filling in a long tedious form for housing and council tax benefit. I already receive these benefits as I am in receipt of IB.....so why the heck do I have to fill in the whole form again??...they already have all my details!!!! Talk about saving the planet....how many trees have been used to manufacture these extra forms??? My application to the local council for a mobility buss pass was returned saying I did not meet the criteria and I would need a supporting letter from my GP, which will cost me £5, and non refundable if they still reject my application. This week has been spent mostly trying to complete my claim for DLA. I'm sure I will be turned down again...but this time I probably will appeal. I didn't last time as I was so exhausted and had a lot of personal worries.

I returned to my doctor to review my medication. I have been having some quite scary side effects with the new medication. Sharp stabbing pains in my chest and shortness of breath. At first I thought just a bit of indigestion...but the doctor doesn't agree. She wanted to send me for an ECG..until I reminded her that I had already had one a few weeks ago. She then asked if there was any history of heart disease or stroke in my family. There isn't as far as I know. Now she has prescribed more medication which hopefully will counteract the possible side effects of my other medication. If it doesn't I will have to have more investigations to find out what is happening. Now I don't normally worry too much about my health, never had any real reason to, and nowadays I tend to put any new symptoms down to the M.E....but I'm starting to get a bit worried now. Are these new symptoms to do with the M.E.....or something entirely separate? I see the doctor again in 3 weeks time..so in the meantime I will try and stay calm.

Soon be Christmas!

3 months!!! I really can't believe it's been that long since I posted on here. This year seems to have gone by so fast, one of the effects of getting older I suppose. My youngest has now turned 18.....and yes he did get very drunk....not that it takes much to do that. I have had another birthday and my neighbours and I have had to cope with an invasion of ants. Luckily they didn't come into my house but they did next door. The floods earlier in the year probably meant that overall water levels were higher than normal and has driven the ants out of their homes. I have been busy though. Coping with the garden has taken up quite a lot of my time and energy. The refurbishment (if you can call it that) has started. I now have a (small) "patio" halfway up my garden. This visually divides the garden which hopefully will make the tasks easier to manage. There is still quite a bit to do... money and time are the stumbling blocks here..but it will get done. Very careful pacing has had to be done. The weather has turned quite cold now, although we do still have days of fairly bright sunshine. Summer is definitely over now so I think the rest of the work in the garden will have to wait till next year.

Health wise it has been a bit haywire and my energy levels have been very low. The ECG results were more or less what was expected....a high pulse rate, so blood tests were arranged to test for the possibility of thyroid problems. The results of that were normal. Now what to try? A months trial of co-codomol taken with my other medication at night to help with the muscle pain and perhaps allow me better sleep. Well I have been taking them as prescribed. My pulse rate is still high and though I do sleep easier and longer, the quality is no better. We will have to see what the doctors next move is when I next see her. This last week has seen me almost zombie-like, sleeping long hours and unable to do much at all. I haven't been out of the house for 5 days now. A special effort will be needed from me to try and get out tomorrow, even if only for a very short walk to the local shop.

I have started making my Christmas cards this week. It's going a lot slower than I would like. The down side of hand made cards is that everyone expects it of me. No getting away with a shop bought one now. I got a lovely surprise posted through my letter box this morning. My friend, a fellow crafter, has sent me a halloween card and a present of a new stamp!! Yes..we crafters do get quite excited at a new product to play with. It is of quite an elegant lady in a full length gown. Can't wait to try it out. Ideas are already starting to form in my head at the different ways I can use it....oh the possibilities are endless!

Rain, rain, rain..and more rain

This has been a month, and more, of relentless rain. The wettest month on record, and it doesn't seem to be getting better. The odd day of sunshine we have in between is welcome but it doesn't last.
My Internet connection was unavailable for five days during the worst of it. Being semi housebound I rely on my computer and Internet...perhaps a little too much at times....but boy was I glad to get it back.
I have been lucky in the disruption caused to my life with the flooding....there are families not more than a few miles away that have lost everything. I live on a hill, I grumble about how every year it seems to get longer and steeper. It is times like this that I am thankful that I live where I do. South Yorkshire has suffered. My heart goes out to those that are in dire straits....but on the brighter side, being Yorkshire folk I am certain that the community spirit and tenacity will come to the fore.

On a different subject my card making seems to be taking off. Between myself, son and daughter-in-law we have regular orders for cards. It now looks as though we may have another outlet at the university. We have done a few "one off" orders but now it seems there has been interest which could lead to a regular monthly order. We don't make much financially,just enough to cover our costs. It is gratifying that people like our efforts enough to buy and send to loved ones.

I went to my GP this week..the first time in a year....to alleviate worries I had about a pain just below my ribs. I thought this might just be a pulled muscle and it seems that this is probably the case. As an after thought she decided to take my blood pressure. Now I don't know whether the doctor is just being cautious or may have concerns. Apparently my blood pressure is a bit low and my pulse rate is way too high, so she sent me to the local hospital's walk in clinic for an ECG. I have to wait two weeks for the results. At first I was worried, there has never been any heart or blood pressure problems connected with my family. My mind has been eased by the fact that on reading a thread on the very subject on Foggy Friends, it seems quite a common symptom with M.E. Perhaps this is just another to add to the list!!

The new Harry Potter film was released yesterday (Thursday) and I am determined to get to see it. I have the final book on pre-paid order and can't wait. The 21st of July will see me queueing with my reference number ready at W.H.Smiths with, I'm sure, hundreds more fans. Well we do have to keep the brain active now that the absolutely fantastic Dr Who series has finished!! Not too long until Torchwood is back either!!!!! (What am I like??)

Lily...

After a week of very unsettled weather we have had a week of beautiful sunshine and now it is forecast for unsettled. That's Great Britain for you. Shouldn't grumble though....we are very lucky really when you compare to some countries.
The first week of fine weather saw me out in the garden every day. I had managed to pace myself and spent short amounts of time tidying the borders. I was very proud of myself even if it did take me five days to do what I would, in the past, have done in a day. I rested for a few days, I really needed to, and then decided to tackle the small front garden. Lily of the valley has taken over there, so on Monday I thought a couple of hours gentle gardening would resolve the problem. BIG mistake. Who would believe that a plant with such small and delicate flowers could be so hard to dig out. It took four hours to clear a patch measuring three feet by two. Let this be a warning to anyone who wants this particularly beautiful plant in their garden. Don't!!!!....unless you keep it in troughs or large planters. The root system is so tightly meshed and travels for miles!..well it seems like miles. I had to start by chipping away with a small hand fork to loosen soil and then try and dig underneath and lift with a large garden fork. I managed it with a lot of sweat and blisters. Now the problem is that there is a lot more of the stuff which has grown in my other plants...I will have to wait until they have all finished flowering, then dig them out, separate from Lily..and then replant what I want to keep. Just the thought of having to do that is daunting.

Time flies so quickly...

Where has the time gone? I can't believe that it's been nearly 2 weeks since I updated. The weather last week was atrocious..and I got soaked coming home from my son and daughter-in-laws. It was good for the garden..but not for me...I felt as though I was coming down with flu. I did rest for a few days...not that I had any choice. Managed to get to town to meet my friend Anne, but I really felt disorientated. She wasn't feeling too hot herself, but we really do need these little trips out...it's the only social life we've got!!! The bus journey home wasn't too bad except for the fact that I fell when I tried to stand to get off. Falling is getting to be a bit of a habit with me. I fell down the stairs a couple of weeks ago.
The last few days have been beautiful weather wise and I have managed to get the garden tidied up. The privet hedges desperately needed cutting. That in itself isn't too hard to do as I borrow my sons hedge-trimmers. It's the clearing up that really gets to me. I'm getting so frustrated that I have to make a choice between housework and gardening. Okay..I hate housework..but it has to be done at sometime. Some things just won't wait!!!
I have managed to get a few cards done as well, despite my inspiration temporarily leaving me. At least I hope it is only temporary!! Between my daughter-in-law and myself we have a regular order of twenty simple cards a month...think we are getting on top of it now. We know what sort of cards are wanted and we have managed to get ahead...taking the pressure off a little. I don't have to worry too much if I don't manage to get as much done on bad days.
The tinnitus has returned with a vengeance. The constant buzzing is getting to me. It's not enough that I can't sleep well because of the pain in my joints, and finding a position which is comfortable is difficult...the noise can seem overwhelming at times. All I want is an undisturbed nights sleep!! This is worse than having young children....at least you expect disturbed nights with them. Oh what a topsy turvy world this is.

M.E Awareness.

I AM NOT A HAPPY BUNNY!!!! Today I received notification from my bank informing me that after careful consideration, they do not feel that my complaint about excessive, (should read extorionate), bank charges is justified, therefore do not feel obliged to reimburse me. It is not ending there. I will be forwarding my complaint to the financial ombudsman....huh!!..see what the bank has to say then! According to the FO the banks usually pay up or make a reasonable offer before a decision is made by the them. I see this as a delaying tactic by the banks so that they can hang on to my money a little bit longer and make even more profit for them. Watch this space
Last week the council arranged..by appointment ..to have my gas fire and boiler inspected and serviced...as is the law. I was out when the engineer arrived but my son was in. By the time he had got to the door the man was gone and a card was left informing me that he would be back today....Friday the 11th. No one turned up. I spent the whole day waiting. I wanted to go to bed this afternoon to rest..but I didn't dare.. I didn't want to miss the engineer. NOT HAPPY.
I don't usually go to bed during the day but I haven't been sleeping well again and I am exhausted. Rant over.
Saturday the 12th May is M.E. awareness day. Indeed May is M.E. awareness month. I know that there will be marches in London and petitions handed in at Downing Street. I can only applaud and give my heartfelt thanks to those brave and persistent campaigners who work tirelessly on behalf of the M.E. community. Without them we would be even less recognized than we are now.

What a week...

What a week this has been. Monday saw me having to go into town on my own. I don't usually do this as I tend to get somewhat disorientated and flustered. There were only two places I had to go and there is a relatively short distance between them so I thought I would be OK. The journey into town by bus seemed to take forever. It was busy and there are ongoing roadworks building a new inner ring road. I finally arrived and went into the first shop..it was busy and I had quite a long wait in the queue. Got out of there and went to my bank. This was the main reason for having to go into town since my local branch has been shut down. Oh dear...must make mental note never to go again during lunch hours. Thirty five minutes wait in a seemingly never reducing queue. At last I was on my home. It was then that the sheer mental exhaustion set in. I wanted to get off the bus as quickly as possible..but I knew that I couldn't...it was the only way home. Tuesday saw me being able to do precisely nothing, except to rest and try and recover. Wednesday I was off into town again. This time it was to meet my friend for lunch. We usually have lunch and then spend a very pleasant couple of hours slowly meandering round the shops. Not today though, we were both tired. Instead we spent some time just sitting in the Peace Gardens. The proper name is the memorial gardens, but few actually call them that. It's very relaxing listening to the water flowing, and it was a beautiful day. Thursday..out again..this time my fortnightly jaunt to a freezer food shop with son and daughter-in-law. I didn't get half of what I needed...my brain just refused to comply with my request to concentrate and think.
Thursday was also polling day for the local councils. I didn't vote. Why? Well we were given the chance to vote online...but unfortunately the application for this service only reached me the day before the deadline...and as I had no idea who was standing for election due to not receiving any leaflets/canvassing material I felt that my vote wasn't really deemed important by the candidates. Apathy on my part perhaps, but I was not alone. The turnout for my district was a mere 31%. Perhaps future candidates will take note of that information for future reference.
The last two days have been spent mainly resting and doing only the minimum necessary. Sunday is my day for lunch at son and daughter-in-laws; hopefully I will be able to make it without too much of a drain on my energy.
On top of all this my mind has been elsewhere. It was a year ago that my soul mate..the man who I found love with, the man I was engaged to, the man who made my life so happy and loved me, lost his battle with cancer. I think a little bit of me died with him.

The Rollercoaster Ride

A poem about living with CFS by Nicole

You look at me now and you may see a grin
But I'm a person who can't enjoy many things.
I suffer from that thing called Chronic Fatigue Syndrome
So most of my days are spent alone at home.
I can't go out like you do and have some fun
That's because I'm twice as tired when I'm done.
I don't recover like you do with one night's sleep
Sometimes it's like I haven't had even a peep.

But you don't understand and you never will
Unless you've had this and gone down that hill.
You go down so fast and don't know what's wrong
But the willpower inside tells you to hang on.
You suddenly realise your life has dropped
While people around you continue with theirs and never seem to stop.
They look at you and encourage you along
Because they don't see what's truly wrong.

It's a debilitating illness which is so hard to fight
There's no one way to get it, nor one way to make it right.
We suffer for ages trying all different things
When all the time, our life's hanging by strings.
Depression sets in and sets up home in your mind
It's the courage inside that one must now find.

So many times you feel like giving up
Running away from it in the hope it will stop.
But you can't leave now cause you're not well enough
Fighting this thing seems to be getting more tough.
One day you feel good and want to do so many things
But the more you do, the more suffering later it brings.
It's like a rollercoaster ride going up and down
One days it's all smiles, the next week all frowns.

We try to stay positive with all our might
But after such a long time, you feel like you're losing the fight.
No doctor can give a perfect remedy, nor specialists the elusive cure
So we live in hope and wonder how much more we must endure.
We see people with colds and flus complain
But a week down the track, they're all better again.
They don't understand how an illness can last so long
And judge the stability of our minds as being the part that's wrong.

Our friends who always happened to be there
All of a sudden have disappeared.
We can't go to parties or get together like before
So now they see us as unsociable and ask no more.
The invitations stop coming and the phonecalls are less
It's now you find out who your true friends are I guess.
Even when we have a good day
Our friends and partner have gone away.

Our world is one of loss and fear
While trying to stay strong and head clear.
We don't chose to live our days like this
Who would want to jeopardize career, friends and bliss.
So don't judge us by your first perception
Unless you know all about, or have suffered from this condition.

What helps us along is your compassion and understanding
A shoulder to lean on and sometimes a tissue to cry in.
So treat us normal, the only difference is our limitations
We're still the same people, with just a few complications.
I'll continue to fight and try my best
Then one day I'll be back to normal like you and the rest.
This is to help you understand how having this illness feels
And how your understanding can help me heal.

Nicole
Nicchan@hotkey.net.au

© May 1998 Nicole Chan

Saturday?...Sunday?....

After a very restless night due to the pain in my legs, I managed to drop off to sleep around dawn. I know it was dawn because of I could hear the birds. I awoke at 11:57 am. I rushed round like a demented mad woman. How could I have slept in..why didn't I hear the alarm? I was supposed to be at my son and daughter-in-laws for about 1:00 pm for lunch!!..and it takes me 45 minutes to get there. It usually takes me a good hour or so to get myself presentable and ready to face the world in the morning, so I thought I had done fairly well to be leaving the house half an hour later. Now I should have realised that something just wasn't quite right when I saw the post on the mat..but it just didn't register. By the time I had reached my local shops....a few minutes walk...the realization that something was terribly wrong was beginning to dawn. Why was the post office and chemist open? Had they changed opening hours for some unearthly reason? I know that the M.E. causes brain fog at times....but come on...the post office and chemist open on a Sunday....since when!!!??? Why hadn't anyone told me? That's when it dawned. It wasn't Sunday....it was Saturday. My brain had jumped a day. I have been known to lose days when I have been so exhausted that I have slept whole days through, but to totally miss a day out...that's never happened before.
This experience has left me totally disorientated. Was it due to the M.E. and brain fog?...or was it one of those "senior moments." This is one time when I hope it is the M.E.

I'm being over-run...

After a week of recovering from gardening and taking a trip to town I found myself again overdoing it. I can't help it. The promised rain was very short, but very welcome, garden wise. I had the choice of gardening or housework again. Gardening wins every time. My more recent hobby of card making has taken a back seat these last few days, but I must find time this weekend as I have three commissions to fill. I have spent the last two days weeding and digging borders in the back garden. My reward has been watching a pair of blackbirds diligently collecting exposed snails and insects, obviously for chicks.
My front garden is north facing so gets little sun and rarely dries enough to need watering. Lily of the valley has taken over, covering every available space between the bluebells. Beautiful as these plants are they are becoming a bit of a problem, spreading themselves out onto the small lawn. A spot of "culling" will have to be the order of the day when they have finished flowering.
My house is also being over run....not by plants...by cranes. I must stress that these are paper cranes. My youngest son (17) has discovered origami and has made a growing flock of differing sizes. This has given me hours of amusement...and amazement. He has always had a tendency to be hyper-active and gets bored very easily. Watching him conscientiously follow the instructions, and his delight at the results was amazing. Always a bright, academically talented boy means that he is always on the go, physically and mentally. Just being around him can sometimes drain me of energy. Two hours of silence and near inactivity is something very rarely seen in him. I just hope this enthusiasm lasts for a while, even though my ream of copy paper is fast disappearing.

Precious memories.........and road pricing

Yesterday, Thursday, was a somewhat strange day. My mind was swirling with mixed up thoughts and emotions. I'm finding this a little hard going today. After my day out on Tuesday my whole body is screaming at me...my fingers are burning and swollen and feel as though they don't belong to me.
First of all it was a day of happy memories tinged with sadness. It would have been my second son's 35th birthday. Matthew died 17 years ago in 1990 after an 18 month battle with leukemia. He was what everyone called a very likable lad. Full of fun, mischievous, with an infectious laugh, and ready to help anyone that needed it......so laid back that he was almost horizontal. He had many friends, and I can honestly say that I have never come across anyone who knew him that didn't like him. He loved his football and cricket and put all his energy into enjoying everything that he did. Every one he met was drawn to him....especially young children and even cats and dogs. I have known him to bring home a few strays over the years. Matthew is never far from my thoughts..but it is on days like these that I miss him the most. I consider myself lucky that I was allowed 18 years with him.....18 years of happy memories that no one can take away. The picture above is of Matthew and his fiancee Debbie, the last one that was taken of him. ( Debbie incidentally became my daughter-in-law when 7 years later she and son number 3, Ian, were married). It was his birthday and the hospital had allowed him home for just 24 hours. He was surrounded by his family and friends....got a little drunk...and even his doctors and nursing staff managed to attend part of the celebrations. The day was tinged with a little sadness as we all knew that it would be his last birthday. Indeed the doctors had not expected him to make it through Christmas, let alone his birthday. Matthew died the following June. There is so much more I could say about Matthew...but I will leave it there...he will always remain in my heart, never forgotten...always loved.


Every other Thursday a family friend takes myself, my eldest son (who is himself disabled) and his other half shopping to a freezer food shop. This is the only time I get to do actual shopping. Most of the time I have to rely on home deliveries or paying high prices at local convenience stores. Now this brings several points to my sometimes overloaded brain. One of them is the carbon footprint issue. My son worked out that by making this trip every other week costs the friend an extra 12 pence more than it would if he went alone. That makes me feel OK...that I'm doing my bit for the planet. If the planned road pricing comes into affect how will that affect the cost of this journey?? That is yet to be worked out. How will it affect the cost of online shopping? Has anyone even thought about that? There are a lot of elderly/disabled who rely totally on this service. Will such services be exempt from the proposed measures....and if not will the extra cost incurred by the company be passed on to the consumer, many of whom are on low incomes/state benefits.
Now as anyone with any common sense knows, it is important for anyone who has not got good health to try and eat as well as possible. Preferably fresh, good quality food. Again this has to be balanced with the availability of these foods, the cost, and being able to access them. Road pricing will mean that vulnerable groups will find it even harder than it is at present to be able to do this. This will mean that they are putting their health at even greater risk, and more strain on the national health service, (not that M.E. patients get much from that). I believe that it is not just the elderly/disabled who will be affected....low income families and people who rely on public transport will also feel the effects. Lots to consider and as yet some unanswered questions. There..I'll get off my soap box now!

Ladies what lunch....

It's Tuesday, and already I am exhausted. I spent a very enjoyable Sunday at my eldest son and daughter in laws. I go every Sunday as my 2 youngest who are at home are usually doing their own thing. My son doesn't live very far...it used to be a 20 minute walk...now it takes a good 45 minutes. This is ok on a fine day....not so good when it is raining and cold. I could take the bus I suppose, 2 buses, 5 minutes journey on each, but the waiting time between buses means that it takes an hour for the journey. I ended up helping my DIL with a little weeding of the garden. Big mistake really on my part...Monday was spent regretting it.
Today I went to meet my friend who lives on the other side of the city. We have lunch and talk about anything and everything. These meetings are enjoyable but tiring. It's a case of do I go and be extremely tired for a few days, or stay at home and forget about having some sort of social life? The answer is obvious..the latter. This is the fine balancing act that many people who have M.E. have to consider. We don't always get it right..but hey.. we need a life as well. Tomorrow will probably spent resting and getting frustrated that I am not able to do some of the simplest tasks. It's at times like these that I try to remember what my mother used to say to me. "The housework isn't going anywhere, it will still be there waiting for you" Wise words I think.

Bat ears and bluebells....

Pictures are of my 2 youngest sons (17 and 23 now!) and Tess.

I've done it....well almost. I managed to get the back garden looking a little more presentable. At least I can now see the plants that I have got in there. There's still some work to be done though. It's a bit like painting the forth bridge, as soon as I've finished I have to start all over again from the beginning. My eldest son has visited today and came up with some ideas for making my garden a little easier to manage. He knows I love gardening but also appreciates that I can no longer spend the energy that I used to on it.
The weather is certainly holding, and it is days like these that I really miss having my dog, Tess. She was my faithful companion for 15 years, and we spent many hours walking in the nearby woods in all the seasons. At this time of year the bluebells are beginning to flower and form a haze of colour beneath the trees. It is a beautiful contrast to the railway line and motorway that can be intermittently glimpsed between the trees. There is a stream which runs down from the golf course at the top, and wild garlic and lily of the valley can be seen there. I have these plants in my garden but they don't look as impressive as they do in their natural setting.
Tess was a little border collie cross with bat like ears who never asked for much, but gave me and my family a lot of pleasure, always a willing participant in a game of football, or a fielder in cricket. She was so patient, especially with my grand children, and never complained when they grabbed her tail or ears when they were starting to take their first steps. Tess was my friend and confidante...I knew she would never tell my secrets to anyone!! I used to walk her twice a day except when I became ill. I still managed a short walk with her...indeed she was sometimes my reason to get up and about in the day. This is one of the things I especially miss. I have thought about getting another dog, I've always had dogs...and cats... in my life, but on reflection it would not be fair. A dog needs exercise and I cannot commit to that now. I am considering a cat though. Cats still need to be cared for but they do not need the commitment of daily walks. A cat would give me the incentive that I sometimes need on bad days.

Stubbornness or common sense?

After Monday's excess of physical activity I'm now paying for it. I knew I would..... but I still hope that one day it won't happen. The pain is draining....physically and mentally.....I can't sit or lie comfortably for more than a few minutes. Walking is like having metal limbs that have long ago seized up and now need some sort of lubricant to make movement possible. Going through my mind is the fact that my pain is not all down to the M.E. My family has a history of rheumatoid arthritis and osteoporosis. My older sister (by 15 months) is already severely crippled by both of these conditions and my younger sister (by 13 months ) is also on the same path. They both started to feel the effects of these crippling conditions at the age of 48...the same age as my mother started. I thought that I had escaped this fate....but I'm beginning to wonder now. The swelling that accompanies the pain in my hands, knees and shoulders is not usually present with M.E. My stubbornness tells me that this is not happening....I'll be OK in a couple of days when I've had more rest......my common sense is telling me to go to my GP and get this checked out. At the back of my mind is the memory of my mother's suffering, that lasted for 20 years with these conditions....and would have suffered longer except for the lung cancer which took here life 16 years ago....just as it did her father....a grandfather that I never knew.

Cut the grass

It's been another glorious day weather-wise. I took the bull by the horns and cut the grass in the front garden. When I say cut the grass, what I really mean is cut the grass, raked up the cuttings ( a full black sack worth) , trimmed the edges and weeded the borders....well I did say earlier that I was a perfectionist! I know I'm going to pay for all this physical effort....but what has to be done has to be done. The weather forecast is for rain for the next couple of days so I feel justified in my actions.....and I really enjoyed doing it. I can see where my plants are now. Just got the back garden to tackle next..and that is about 5 times bigger than the front. Well I should be reasonably rested by the weekend when fine weather should be with us again. One of the many mysteries of life and gardening is the fact that the lushest, greenest weed free grass always grows where you don't want it to.....and no matter how careful you are about removing shoes before going into the house, grass always manages to find it's way on to the living room carpet. That's another job that will have to be done.....tomorrow.....perhaps.
Now I think a nice relaxing soak in my favourite bubbles is my just reward.

Rhinos and rain

Well the Tinnitus has now diminished to a gentle hum..I can cope with that....I've managed to get a lot of sleep!!
The weather is holding out so far...if it continues I may be able to get out in the garden in the next few days. My 17 year old offered to cut the grass for me this morning....but not very enthusiastically...think I prefer to do it myself. I am a bit of a perfectionist, which is not good when you have a condition which makes even some of the more mundane tasks daunting.
Dr Who returns tonight....am now an addict.
Well after watching that I don't think I'll ever look at rhinos in the same light, neither will I complain when the rain pours DOWN!!

I need sleep!!

I'm feeling confused today. Probably through lack of sleep.
The last few days have been glorious weather -wise.....I felt that this fact ought to lift my spirits. I wanted to have my spirits lifted.... instead I've felt muggy and in pain....like I've been slammed into a brick wall. To make matters worse the council have been out cutting the grass verges. This has only compounded my frustration in not being able to get out into my garden. I love gardening....I used to spend hours out there. I'm no expert...I don't know the names of a lot of the plants.....I don't know what sort of soil I have. I just put things in where I think they ought to go and trust to good luck. Most of the time things work out OK. Now it seems as if it is becoming a chore, and I don't want that to happen. I want to continue to enjoy it. I've gone over and over in my mind how I could make my garden easier to manage. The solution evades me at the moment. Whatever solution I think of will probably mean spending money that I just don't have. Perhaps I need to let this one go for the moment. I'm just going round and round in circles trying to think about it.
Exhaustion is getting to me now. I want to sleep, but the continuous buzzing in my ears is driving me crazy. Mild tinnitus is something I've always had but it has increased over the last 2 years. It's not so noticeable during the day when I can mask it slightly with the radio or TV, but at night when everything is quiet it fills the whole room, denying me of the precious sleep I need. 4 nights now have been spent tossing and turning...eventually getting up and putting music on low trying to lull myself to a least a few hours. It's not working.

Where it started

Well I've managed to get this far.....but let's go back a bit to where it started.

October 2004 was when I first fell ill. Nothing too dramatic..just a chest infection, which led to 3 weeks off work. I went back to work telling myself that everything was OK, even though everyone was telling me that I wasn't well enough....but did I listen?..of course not! I'm an independent person who knows her own mind and is never ill...and anyway it's coming up to Christmas.....a busy time at work. Ha ha...2 weeks on and I collapsed at work and had to be sent home...still had the infection...another couple of weeks off.
I got through Christmas not feeling brilliant...put that down to being rushed off our feet. My last shift of the year....hooray!...new Years Eve. Got home looking forward to to 3 days off.....those 3 days stretched into 6 weeks...then 3 months. My GP said I had a bout of the flu. I wasn't getting any better..in fact I was feeling steadily worse as the time went on. My GP said that I should consider trying to go back to work..I should be getting over it now. I began to think that the way I was feeling was all in my head, and all I needed to do was pull myself together and get back into the swing of things. Well that's what I did.....5 months into the year I convinced myself that I was ready to go back..albeit on reduced hours. I knew it wouldn't be all plain sailing..I expected that. What I didn't expect was to be on the verge of collapse after only 2 days. That was the last time I worked......and it was then that my GP diagnosed PVFS. Since that time I have not been able to work, and last May (2006) my employers terminated my contract.