A topsy turvy week!

Since I have received the letter from the benefits people, I have been very down! Not surprising really, but it is also taking it's toll on my Fibro! A well known symptom of the disease is that stress exacerbates the pain, and I have certainly had plenty of that in the last week! I went to the doctors last Friday and got my sick note, which I have now sent to the benefits office with my letter informing them that I am appealing against their decision and asking for copies of all the reports they have for my case, as decreed by the Freedom of Information Act. The problem I have is that my benefits will stop next week, and I don't know how quickly they will act on my letter and sick note. I was told that as long as I sent in a sick note with my appeal, my benefits would continue until my appeal was heard! The other problem I have is that I am going on holiday on 13th June, and I have no doubt I will be coming back to letters and demands to go into the Jobcentre for work based interviews! Another daft idea the government have come up with - people who are given this benefit have to go into the Jobcentre and be interviewed to see if they are able to apply for jobs! Ridiculous really, if they aren't fit to work, what is the point? I thought the whole point of this change in the system was to save money, seems to me they are spending more! I fear this debacle will go on for a lot longer than I have the stamina for!

I also had a bad day last Thursday, it would have been my lovely mum's 86th birthday had she still been with us, and I miss her so much! My heart still aches for her, and my arms want just one more cuddle and to tell her I love her! But I know that she knows that, and I also know that she is very proud of us all. I just wish she was here to see it, my lovely mum, my rock, the woman who made me who I am today. Love you mum, with all my heart, always and forever. xxxx



My lovely mum, I always light a candle for her on her birthday.



On the brighter side of life, we have had a spell of glorious weather, which usually makes me feel so much better, but alas this is not the case on this occasion! I still feel rubbish, and when I was at the docs last week I also asked for some stronger sleeping tablets and he upped my Amitriptyline to 25 mgm from 10 mgm, so since then I have felt like a zombie! Everything I do takes me three times as long, and I sometimes feel like my brain is sloshing around in my head! I also feel like things in front of me are moving around, a bit like being on a boat in a storm! Yuck! But I did get a good nights sleep, so now I just have to decide if the side effects are worth it!

On Saturday we went to see our friends Elaine and Vic at their new residence in Northampton and had a lovely afternoon and evening with a barbecue and a few glasses of bubbly to celebrate their retirement! We will also be in Spain at the same time in June, as they are making their way over there to do some work on the apartment they are moving into before the weather gets too warm! Lots of happy times ahead I hope, with two very good friends! Sunday we spent the day at home, just chilling out, sunbathing and eating! Bliss! Sitting outside for breakfast makes the whole day seem so much better!

This weekend coming up is the Diamond Jubilee of Queen Elizabeth, who has this year been on the throne for 60 years, an incredible achievement for one so young when she started - she was only 26 when she became Queen Elizabeth II!! We have a very busy weekend too, Aaron moves into his first ever home on Saturday and we will be in Leeds helping him move. We will be going up on Saturday morning and returning Sunday evening. On Monday we will be going to a neighbours house for a Jubilee Party, and Elaine and Vic will be joining us, with Vic's mum Mary. So for the next few days I will be getting the house sorted ready for them coming, thankfully the cleaner will be here Thursday so I am going to ask her to help me clear out the little bedroom, and we will be moving everything into the study for a few days! Well, until we go to Spain - we keep thinking we have taken everything we need then we find more 'stuff' to take! This gets piled into the little bedroom, and piled, and piled! But hopefully this will be the last lot, especially as the Christmas decorations are now going! I want some over there just incase we ever get a Christmas over there, maybe one day we will! The only thing I cannot do is be away from my boys on Christmas day, they will always be my priority!

So all in all a busy few days ahead, a nice weekend of celebrations to look forward to, and some good times with my lovely hubby Richard, my boys Aaron and Luke and their partners Vicki and Abby, and also with special friends Elaine and Vic! All it leaves is for me to say Happy Diamond Jubilee Lizzy, and here's to many more!

Let Battle Commence!

What a bad weekend it has been! I received a response from the DWP at long last on Saturday, great day to receive a letter, means I can do nothing about it until Monday! And I quote:
'I am sorry to inform you that you are not entitled to Employment and Support Allowance. This decision was made because after your Work Capability Assesssment, we have decided that you do not have limited capability for work. We will send you a separate letter explaining the reasons why.'
This incredible statement was followed by the next sentence of:
'I understand that this decision may come as a shock to you. However, I should explain that entitlement to Employment and Support Allowance is not based on someone's health condition or disability itself. It is based on what a person is capable of doing, rather than assuming that their health condition or disability automatically prevents them from being able to work.'
Well, talk about a contradiction in terms, and how is it that a consultant can retire me medically unfit for work, after months of treatment and knowing my case well, but a man (I have no idea if he was a doctor) can examine me for approximately 30 minutes and from this alone they have decided that I am fit to work! They also tell me in this letter that my benefits will stop on 6th June, which basically gives me just over 2 weeks and then my money will be stopped!

I spent the weekend in tears, couldn't sleep, my blood pressure is through the roof, and now I have to fight to try and keep my benefits. The letter goes on for a further 3 A4 pages with a load of information, most of which I do not understand, about how to appeal against the decision, that I can apply for Jobseekers Allowance - how can I get this when basically I can't even cook a meal on my own (I get DLA for this), can't do my own housework (I pay for a cleaner), do my own ironing (I use ironing angels) and even getting up and getting showered leaves me exhausted! I have also been given a blue badge because I cannot walk very far!

This morning I phoned the number on the letter, and spoke to a very nice lady who told me that to keep my benefits I had to appeal against it and send in a sick note with the appeal. She also told me that in 75% of the cases where the benefit was turned down, it was revoked on appeal. But she also told me that the appeals were taking 6 months to be heard because of a back log. What a joke! The back log is because the government have changed the system to save money, but this system is causing more work, and they are spending more money on the appeals tribunals than they are saving on benefits! This country is going downhill so fast!

So now I have got an appointment at my doctors for Friday, I have to wait for the letter telling me how they came to this decision, and then I have a battle on my hands to try and keep the benefits that a consultant told me I was entitled to! In the words of the consultant who told me I had to stop working 'If you do not stop working now, you will be in a wheelchair by the time you are 50'. I am now 54 and I like to think that because I did stop work, my health has not deteriorated as much as it could have done! But since the original diagnosis was made I have also developed osteo-arthritis and Fibromyalgia, and these two, plus the fact that I have two discs missing in my back, have left me in severe pain and with limited movement, a lack of energy that you would not believe, and the worst thing of all, the memory of a goldfish! When I spoke to this woman today she asked me my postcode, I had a terrible job remembering it! So if anyone out there has any idea what sort of job I could do, at the age of 54 with a medical history like mine, and the only qualifications I have are nursing, I would very much like to hear from you! That is of course if I can manage to get out of bed in the first place, because that is something else that is a problem, I sleep less than 4 hours a night, so by 2 p.m. I need to sleep.  Way to go DWP, perhaps next time you want to assess me you would like to move in for a week and see what I have to deal with on a daily, in fact hourly, basis! Maybe then you would feel differently!

Joan Crawford and Bette Davis, now they were two legends!

I am having a bad day! I had a terrible night's sleep, the men went out at 6 a.m. this morning so I was woken by them getting showered and ready for their day! I did fall back to sleep, only to be woken by the phone ringing at 9 a.m.! So frustrating! I had a job waking up, my eyelids felt heavy, and my whole body felt like it had been used as a football!

Yesterday I had a brilliant time at the theatre, the play was absolutely fantastic, and the two actresses - the only two people involved - Anita Dobson and Greta Scacchi were incredible! They played the parts of Joan Crawford and Bette Davis, and from what I have read about the two actresses they got them off to a T! The whole play was of them in their dressing rooms, preparing for the filming of a scene in the well known movie 'Whatever Happened to Baby Jane', and it was fun, it was emotional, it was deep, but my goodness it was enjoyable! The language was a little choice at times from the Bette Davis side of the dressing room, but it was in context, and it was done with a smile! The only thing I didn't enjoy was the fact that I had a man sat in front of me who completely blocked my view, so I had to keep leaning to one side to watch the play, and this did not do my back any good! I had had the sense to take a cushion with me to put in my back, so this helped me, but the constant moving of this man meant that I had to keep adjusting my sitting position to be able to see the play! It could only happen to me, all the rest of the people on the front row were short, but this man was at least 6 foot tall!

After the play Elaine and I went to Bella Italia and had a meal, when we went into the restaurant it was fairly quiet, but by the time we left the place was heaving! So glad we didn't go in any later, because the service was not brilliant with just a few in there, and it got worse as the evening went on! We sat for 20 minutes before they came and took our food order, and people who had come in after us were served before us! This has always been a pet hate of mine, and I have often got up and walked out of restaurants when it has happened! This was not the worst of it though, when they did come and take our order, we ordered a glass of wine for me, and Elaine ordered a blood orange juice and a glass of tap water, they brought over the tap water and a lemon, and no wine! The waiter asked if we had ordered our food, which we had, and then disappeared - no wine was forthcoming! I called him back over and explained that they had missed off my wine and given Elaine the wrong drink! He took the lemon away, and we waited another 10 minutes for the wine and the correct drink! Oh dear, this did not bode well! We ordered a pizza garlic bread to share with some olives as a starter, and thank goodness we did, because we waited quite some time for our main course! The only upside was that when the bill came they had missed off my second glass of wine (although they had put on the second drink Elaine had!), Elaine's coffee and her pudding and I am afraid because of the poor service and the long wait for our food I didn't tell them! It was very naughty, I know, but it was a frustrating meal, and as there were only 3 other tables of people when we first went in there was no need for such poor service!

When I got home at about 7.45 p.m. the men had had their tea, walked the dog, and were sitting chilling waiting for me to come home! We had a good chat about their day, I told them about the play, and then we watched TV for a while! At about 9 p.m. I got a call off my lovely son Aaron, so for me it was the perfect end to an almost perfect day!

Today I am taking it easy! The dog has her bath at 12.30, and I have to go and do a bit of shopping at Aldi! I am sitting with a blanket round my legs at the moment, because they ache, it feels like someone is sticking pins in them, and I feel like I have a weight on my shoulders as they are so sore! The joys of Fibro, the pain moves all over and I never know which part is going to hurt next! The upside is I have done the washing this week, the ironing was collected yesterday the house was cleaned with the help of the men on Tuesday so all I need to do today is tidy up a little and organise the tea! It has taken me many years to learn not to rush around and clean every single day, the dust will be back, the house will never be 100% clean, so as long as it is reasonable I have to accept that this is how it will be! Life is too short to worry about a bit of dust, and as my lovely mum used to say 'this is not a dress rehearsal, this is it, so live every day like it's your last' and that my friends is exactly what I intend to do!

Bad days can turn into good ones!

I started today trying to get through to my doctors surgery for an appointment! Oh the joys of a surgery where you have to ring on the day to get in and see a doctor! After trying for 30 minutes I finally got a person (and not a recorded message), and the wonderful receptionist told me that as it was now after 9 a.m. there were no appointments left! I tried very hard to keep my cool, but I did insist on being given an appointment, was very assertive, in that I was actually ill and needed to be seen, and she then said 'can you get here immediately'! Oh great, I had been on the phone since 8.30 a.m. and was not yet showered! I told her yes, I could be there in 20 minutes, so I threw on some clothes, brushed my teeth and my hair and drove into town! The one consolation of this quick appointment was the fact that I didn't have time to worry about having a panic attack or working myself up to going! So, I spoke to my doctor about the bad dreams, the sleeping badly, the back pain, the panic attacks, and he told me to up my Amitriptyline (I was tempted to ask if this would make the dreams twice as bad, but I resisted!!) to two a night for a while and to go back in two weeks! Oh great, let's hope that helps the sleep, but doesn't make the dreams worse!

When I got back home I felt exhausted, it is difficult to explain but your whole body feels like it has been through a wringer! I couldn't put one foot in front of the other because I felt so wobbly!So I sat for a while and had a coffee and some cereals, then went and had a shower! By this time it was 11 a.m. and I felt like I had done a day's work! After my shower I received a call from my cleaning lady, she comes in once a week and does my upstairs, the bathrooms and bedrooms, and she was calling to say she wouldn't be able to make it! This was not what I wanted to hear today, I had already stripped my bed, and was in the  midst of changing the bathroom towels and doing the washing, so this would mean I would have more work to do! And I was already exhausted! But never mind, I had to get on with things, so I paced myself! I had already decided to make a roast chicken dinner, so I got that sorted first, veg prepared, chicken prepared and all the trimmings! That would keep me going, I love a roast dinner!

When the chaps got in from work they did their bit and helped! Luke helped me finish off the upstairs, helped with making our bed too, Rich finished off the dinner and served it up! So between us we still got everything done and I had saved £20 by not paying the cleaner! I will say though that I would rather pay the £20, as the bending (although Luke did those bits!) and scrubbing are difficult, especially with my back as it is and my hands being so sore! But we got it done, and now my house is reasonably clean and tidy!

The upside is that tomorrow I will be having a lovely afternoon off and going to the Belgrade Theatre in Coventry to see Bette and Joan, starring the wonderful Anita Dobson and Greta Scacchi, with my friend Elaine and afterwards we are going to eat a nice Italian meal and have some girly time together! So the outcome of what was a bad start to a day is that my lovely menfolk have pulled together and helped me get everything done, and I have a nice easy day to look forward to tomorrow!

I must say going to the theatre in the afternoon and then out for a meal seems quite decadent! I will let you know how the visit goes in my next blog but meanwhile below is the link to the Theatre and the synopsis of what the show is all about!

 http://www.belgrade.co.uk/event/bette-and-joan

Fibromyalgia Awareness Day!

For the last two nights I have not taken my Amitriptyline! The dreams they gave me were upsetting me and making me feel really morose during the day! Some of them were so vivid I was waking in a pool of sweat, having dreamt that I was either drowning or being buried alive, two of my biggest fears! The dreams have subsided, but I have not slept that well for the two nights, and I am now feeling worn out! I also have the most horrific pain in my back, going down into my left leg, I am extremely irritable and I just want to go to sleep and wake up and be better! I have also got the worst Fibrofog I have ever had - yesterday I forgot that the dog was due to have her bath and sent her off to work with hubby, only for the groomer to turn up here at 10.30 a.m. ready to bath her! I felt like such a fool! I was so angry with myself, and even though I had written the bath on two calendars and in my diary, I still forgot! Gemma was so nice about it, but I know that time is money, and she had used fuel to get here in her big wagon, and I felt awful about it! She has rearranged for next week, so I must get her a bottle of wine to say sorry!

On the other side of things, I went onto Facebook this morning and one of the ladies who I have made friends with through my wonderful friend Sara Diana Williams, Joni, had posted on my wall that today was Fibromyalgia Awareness Day, and had mentioned my name on it! I have since then been chatting with another lady who suffers with this awful illness, and it has made me feel so much better! This illness is so debilitating, but the worst thing with it, is the sense of loneliness and rejection you feel, because I think that a lot of people who see me think that there is nothing wrong with me, and after a while they get sick of me moaning! I try so hard to keep my spirits up, but some days that is just not possible! Today is one of those days, it started badly (I got out of bed and by the time I had walked to the bathroom I was in tears with pain) and continued to get worse (the pain in my back is now shooting down my left leg and every movement is agony)! The other thing that is annoying me is the fact that I am expected to just carry on regardless (make a good film title that would - ha ha!!) and often get no help or support from other half! Shame the same can't be said when the boot is on the other foot - he had tootache last weekend, started on Friday, wouldn't go to the dentist, moaned and groaned about it all over the bank holiday, then went to the dentist on Tuesday and is now on antibiotics! I could quite happily have knocked the bloody tooth out of his head at one point! In fact, one of the dreams I had was that exact scenario!!!!

The main irritation for me is the Fibrofog, the constant feeling that you have forgotten something, or to do something, the frustration when you are talking to someone and the word you want to say will not come into your head and out of your mouth, and the more angry and stressed I get the less chance I have of ever remembering that word! Stress is known to make Fibro worse, and right now I am stressed, mainly because I am in pain, because I have stopped my Amitriptyline, but the thing that has made my illness worse of late is the fact that I am still waiting to hear from the Benefits people about my examination almost three weeks ago! This is an absolute violation of my basic human rights, for years I worked in a job where I was in charge of a ward of 26 patients who were acutely ill, I paid into society, and now that I am ill and can no longer do that job, some person, who has never even met me, will sit in their little ivory tower and decide whether or not I can continue to have the benefits I was given when I was retired as medically unfit by a consultant in the field of my illness! This person has no medical background, they are just a puppet for a government trying to make cutbacks in all the wrong places, so if they decide from the information they have that I should actually be back at work, I will have my benefits stopped and will have to seek employment! Let's hope that if I get an interview for a job I remember to turn up for it, and if any employer in their right minds takes on someone my age with my illness, that I remember to turn up for work on the right days! The chances of me forgetting to go are pretty high, and the odds of me coping with a job are not!

That damned brick wall!

I think today is one of 'those days'! I feel like I have hit a brick wall, and I could quite happily curl up in bed and sleep for days! I am sitting here with my eyes closing, head nodding and feeling like my head is going to burst! I slept really badly last night, I went to bed at about 11.40 p.m. and at 2.10 p.m. I had been up to the toilet three times, and felt as though I had maybe slept for a short time, but had no idea how long! And when I did sleep I had those horrible dreams again!

I have forced myself to keep going today, but I am in a lot of pain with my back, something that only seems to happen when I am in a 'bad place'!! I think I have pain in so many places that when I do get pain in my back it is usually really bad, and today every time I sit the pain shoots up my back and into my shoulders! Oh the joys of having a failing body! I have also woken every morning this week desperate to go back to sleep, unable to straighten out my hands, and wanting to scream with the pain! But as usual I just carry on, get out of bed, get showered, tidy up what I can manage to do, prepare tea, etc.  I have also been shopping twice, once to Aldi and once to Tescos. I find it easier to cope if I do it in small amounts, and I have learned to split the shopping into lots of bags with a small amount in each!

I have tried really hard this week not to ask too much of the men of the house because they have had a tough week themselves, a visit from UKAS to get the Lab registered!   A UKAS registration will mean more work, which in turn means longer days, which means I will be on my own more! Quite a daunting thought, as my days seem long enough but the business needs to be built up if it is to support two families! As Luke is planning to buy his own home soon with his partner Abby, the business needs to be built up to give him the finances to do so, and that is what they are all working towards! Plus of course the fact that we have to have enough to survive on and run two homes! I so wish I could do more to help! I have thought about writing a book, but it seems such a daunting task, and with my memory as it is, I don't know if I could manage it! Maybe I should do a J K Rowling and go and sit in a Cafe somewhere and sip coffee all day! But then I do wonder if I would be able to do that too, as what goes in seems to come out in abundance - I would probably spend more time in the loo!!!!!

I did take my neighbour Pat to Pennie's today to try out the wonderful new Vibration plate, which does seem to be helping my metabolism and my joints, so I am hoping that with the use of the plate and my exercises given to me by the Fibromyalgia team at Walsgrave I will see an improvement! We will see! I am trying to be optomistic, but unfortunately that is one thing that seems to desert me at times like this!!

Well, I am off now to try and start the tea, meatballs tonight, looking forward to that as it is always a nice hearty meal, might even treat myself to a glass of wine!

Another Miserable Bank Holiday!

Well, another Bank Holiday where the rain has spoiled the day! It has rained heavily all day and it is cold and miserable! Strangely though I awoke this morning to brilliant sunshine and got up to turn the heating down because it was too warm! The wonderful British Weather!!

Other than a bit of washing and cooking the tea I have not done a great deal today, I have quite a busy week ahead so want to save my energy! I have appointments at various places this week in preparation for going away, and as it is now only 5 weeks until we leave, I have quite a lot to do! One thing I do have to sort out before I go is my medication. After discussing with Abby, Luke's girlfriend, who is a Pharmacist, the problems I have with terrible dreams and disturbed nights, she has suggested that I go back to the doctor and ask for some other form of medication to help me sleep. I cannot sleep without Amitriptyline, but when I take it I have the most horrific nightmares! So it is a bit of a catch 22, if I don't sleep, I get stressed, and if I get stressed the Fibro if so much worse! So I keep taking them in the hope that I get a good night's sleep! Such a vicious circle!

But on the plus side, in 5 weeks and 2 days I will be on the boat and making my way to Spain to the apartment, with my lovely hubby and my dog Jess! The reason for the boat is because we are taking our dog! I cannot bear to be away from her for that long, and I don't think it is fair to expect Luke to care for her either, he has enough on his plate looking after the house and the business! We have driven to Spain twice now, but on the second trip we found it all to be a bit too much, and the last few hours of driving got us both a bit wound up, and I was in agony too! At least this way we have 24 hours on the boat then an 8 hour car journey in Spain, and we have a 4 hour journey from home to the boat before we sail. A lot easier than 4 days of travelling in the car, sometimes for 7 hours!

Before that, we have the job of going to Leeds for the weekend to move Aaron into his first home! He has bought a lovely four storey house (on his own!), it is his first purchase, and I couldn't be prouder of my boy, such a big decision to take, moving on from renting to buying your own home! He is settled into his job at Roundhay teaching mathematics, and they are desperate for him to stay at the school. Male maths teachers are few and far between, so when they do get one, and a good one at that, they do tend to hold on to them! Although I feel sad that he will be staying up north, I am looking forward to him moving into his first home, and I hope that he will have many happy years there. It is difficult as a mum to cut the apron strings, so when he went off to University at 18, I was upset, I cried, I used to sit in his bedroom and just look at his things, it was really difficult but I knew I had to let go! So although this is a wrench, I have adjusted somewhat, but I will always miss him being here with us. I consider myself lucky that when it comes to Christmas and Easter he still wants to come home, as well as many other visits throughout the year, and I love that, it is great to know that he still wants to spend time with us! Long may it continue. Below is the link to look at the house that Aaron is buying!

http://www.findaproperty.com/for-sale/property-10479087

On the other hand we still have Luke at home and he and Abby will be looking at buying their own home later this year or early next year. When that happens we will look at selling the house and moving into something smaller. Two of us, plus dog, rattling around in a 4 bedroomed detached house seems a bit of a waste. Plus with my mobility slowly getting worse, we are looking at getting a bungalow! It will be a big wrench for us to leave this house, we watched it being built, we chose the plot and then they built it, so it has been ours for 22 years and nobody else has lived in it! The boys did their growing up here, they went to school here, it will be very sad leaving it, but life moves on! In fact when I made the photo album for Elaine & Vic I found the photos we had of the house being built, at the various stages, right from the bare plot!

It seems really strange when I consider that when I was in my teens I can remember thinking that 40 was old, here I am at 54 feeling as if I am physically like a 74 year old, but in my head and heart I still feel like a 24 year old! Well after the weekend I now know I am not 24, I am definitely 54, it has taken me until today to get myself sorted, but as I have already said it was worth it all just to see our friends faces when they saw all their family and friends waiting to surprise them and send them off in style!

A busy week ahead means I may not get on here until the weekend, but I feel I am doing well with my blog at the minute, keeping to my promise to put my thoughts down more frequently! Let's see how long it lasts!