I woke up with a particularly heavy heart today and general anxiety about the future. I'd had nightmares about where I used to work and I took early retirement from there nearly 9 years ago!
Then it dawned on me that it is 14 years ago today that I lost my lovely mum to cancer. She was only 65 and was my best friend. I looked after her throughout her years of ill health and worked full time. By the time she was finally diagnosed with rectal cancer she only lived 6 and a half weeks as the cancer was so advanced and had already spread to her liver and her lungs. The Consultant Surgeon who saw her said he had never seen anyone in all his years (and he was very near retirement) with such advanced cancer who had never, ever, been referred to the hospital.He said her rectal tumour was of such a size that it must have been growing for 2-3years so her GP should have picked up on it. Unfortunately though, her GP had neglected her. I don't think I have ever really got over the shock of losing my mum in this sudden way and with such a dreadful cancer. All cancers are horrendous but with rectal cancer there is very little dignity. My poor mum must have really been suffering but, bless her, she never complained. I worked for the NHS and many of my colleagues said I should make a formal complaint about the GP, but I didn't as I was too upset about everything and was struggling to get my life back on track. Complaining wouldn't have brought my mum back and I just hoped that the GP would learn from his mistake and treat other patients better in the future. Then my lovely mum wouldn't have died in vain.
15 months later I met the man who became my husband and he is my rock. I thank God every day for him. I really do not know where I would be without him. I really do feel for those who are on their own and struggling with this, or any other illness, with no one to care about them or to help them.
My Fibromyalgia was diagnosed just before we got married 10 years ago but the Consultant Rheumatologist said I'd probably had it for 2-3 years before being diagnosed. I am quite sure that the shock of losing my mum was responsible for bringing me down physically and emotionally. I had no other family to help me and was totally alone.
I lost one of my lovely cats last September. She was 15 and she was the last link with my mum. I have 2 other cats and 2 rescue dogs but adopted all of them since I have been with my husband. I love all of them but I still really miss my old cat.
I also have the ESA form hanging over me but have made an appt. for an advice representative to help me with it, as I find all these sort of things daunting.
I also have an appt. with my GP tomorrow to update him about how I am. I hate bothering the Dr. and am feeling anxious about this appt. My husband will take me and go in with me, as I forget what I am trying to say and lose my thread and get my words muddled. Also I forget what he says to me, so I need my husband there as a prompt.
I didn't really want to bother you with my problems, as you all have so many of your own, but then I thought "What the heck. Hopefully someone, somewhere, will be able relate to what I am saying and be kind enough to respond, as that is what this site is all about"
I feel so anxious about everything that my head is spinning and I can't get my thoughts into order.
I'd like to have a sleep, but feel that there is just too much to do. Our toilet sprang a leak a couple of days back and my OH was out and I hadn't even got the strength in my hands to turn the stopcock off, so put loads of towels down to soak up the water. The plumber is coming tomorrow and I feel that I ought to tidy up a bit but can't really be bothered. I wish the plumber wasn't coming the same day that I have to go to the Dr, as I shall be all on edge hoping the plumber won't be late. My appt. is 5.00pm and the plumber is coming in the afternoon! MyOH told them that we will have to leave here by 4.30 so I am just hoping that he turns up in good time, otherwise I shall be an absolute bundle of nerves! I can't cope with too many things happening on one day. Also I sing in a choir (when I have the energy to go!) which practises on a Monday evening and I shall be worried about getting there on time. Again my husband takes me. Knowing me, I'll probably end up not going to choir as I shall be worn out by the time I have seen the Dr!
So sorry to have rambled on. I know that what I have written above may not seem like much to worry about, compared to what I realise some of you are going through but it has helped just to get this down. It has taken me ages as I make so many typos as I go!
Love and hugs to all of you. Saskia XX
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Saskia
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Hello Saskia, thank you for your message. I am so sorry you feel so low today, it's understandable you have a lot on your plate right now. The simplest things add to our already growing list of stresses and add to our burden, it's understandable. Don't be too hard on yourself.
The memories of losing your dear Mum is bound to hit you hard too, allow yourself time to deal with this. Losing a cat, a beloved pet, is upsetting. Our pets are part of our family and losing them can feel immense.
All the benefit worries all add to the load too, it's perfectly understandable how you feel. Take hubby with you to the Doctors tomorrow, make sure you write everything you want to say down on paper so you can refer to it when you go to the surgery. If you are anything like me your mind will go blank the minute you walk through the door, writing down bits and pieces can be a tremendous help. Your hubby will remember what the Doctor tells you so don't worry about that. If you don't think your meds are helping you as well as they should be mention this too, so you ensure you get all the help and support you need.
Do you have the Benefits and Work info sheets on ESA and DLA? If not, please email us on info@fibroaction.org and we will be happy to send them to you for free. They give a wealth of information on completing forms, assessments and the benefits process. You might find them helpful.
It sounds like you have a wonderfully supportive hubby which helps greatly.
I hope tomorrow goes well and please don't apologise for your long message, we are always happy to hear from you and we will do all we can to help and support you along the way as much as we can. if you prefer to private message, please feel free to do so in absolute confidence, we are always happy to help in that way too.
Take care Saskia, please let us know how you get on. We are always here for you.
Thank you so much for your kind words and advice. It helps just to know that someone " out there' cares! Thank God for cyber friends, eh!
I'll let you know how I get on tomorrow. Emily ( I think.... might have been Emma ) sent me the ESA sheets which my OH downloaded for me. It all looks so daunting, which is why I am going to get someone from our local advice and representation centre to help me. They helped me with DLA on 2 occasions and, if you are unsuccessful with an application, they will go to a tribunal with you but I really hope it doesn't come to that.
My pleasure Saskia, always here for you and for all our members too.
Just take one day at a time, one step at a time, try not to overload yourself with too much.
Get hubby to take you to your local CAB (Citizen's Advice Bureau), they have a wealth of information and can help you complete any forms that worry you. Fingers crossed it all works out well for you.
Take care and wishing you all the best for tomorrow, please let us know how you get on.
hi Saskia I am sorry you are so down today I do understand how you feel about your mum I lost my mum 13 years ago and she was my best friend too good luck for tomorrow take care sweetheart love beth x
Thank you so much for replying. I am so sorry to hear that you lost your mum 13 years ago. It should get easier, shouldn't it, but we can't help missing our mums, especially as we were both so close to them.
Hi Saskia sorry to hear you are so low,everything caves in on us when we have sad times or a flare. Please know that we are all here for you at any time good or bad!
I too met my husband at a time when I needed some one nice in my life...and I can honestly say he is the only person in my life who really understands me ....even my querkie ways he accepts. I am so lucky I met him,don't know where I would be now without him helping me the best he can!
Hope all goes well tomorrow for you, it will be hard but you can do it. Just take it in your own pace!!
Big Gentle (((((((((((((((((((((((Hugs))))))))))))))))))))))))
It is so kind of you to respond to my blog. I am glad that you, too, have a good man in your life. Where would we be without them, eh? Like you my OH is the only person who really knows what I go through and he accepts me with all my funny quirky ways, too, and us fibromites certainly have some quirky ways don't we?! Even I don't understand myself sometimes..lol...
Thank you for your lovely big gentle hug! My lovely mum used to give me nice warm hugs when she was alive. I miss them!
I'll let you know how I get on tomorrow with my GP.
Take care,
Love and hugs Saskia. XX
Hi Saskia, I can kind of understand how you feel. I lost my Mum almost 2yrs ago to a rare cancer that went undetected because doctors would not listen to what she had to say until it was too late....She died 2 months after being diagnosed...I was angry but have accepted that these things happen and doctors make mistakes too...looking back I haven't been right at all since then. I also can feel for you re. the appointments, I hate when a lot of things are happening on the one day and panic about time!
I'm so glad you have your husband too and that he is so understanding and there for you. My husband is wonderful but I don't always appreciate him especially on a bad day when I am feeling sorry for myself....I hope tomorrow goes well for you, the plumber turns up on time and that the day is at least a little stress free xx
Thank you so much for your kind response to my blog. I am so sorry that you lost your mum 2 years ago. That is very recent and I remember still feeling very raw during the first couple of years after my mum had died.
I am so sorry too that, like my mum, she did not live very long once diagnosed. I accepted what happened as, like you, I realised that Dr's make mistakes but the GP we had was young and a bit of a whizz kid with a very uncaring attitude. Conversely, his lovely young wife nursed my mother at the hospice, during the night just before she died. I am not one to complain or to want to get anyone into trouble which is why I never pursued making a formal complaint against the GP, although I was advised to by other doctors who were Consultants at the hospital where I worked, as they were horrified by my mother's treatment ...or lack of treatment. They did understand though that I did not want to do this and they told me that "things were said in very high places" i e when they held their meetings my mum's case was highlighted as one which had gone very wrong and the GP concerned was made very aware of the error of his ways. So, as I said in my blog, I left things alone and just hoped that he would learn from his (sorry to be crude) "cock-up" and hopefully treat patients better in the future.
I can understand you saying you have not been right since losing your mum as I think that is true of me also. Did you have fibromyalgia before you lost your mum or has it come on since?
I am glad that I am not the only one who panics about too many things going on on one day and about fitting things in around each other! Sometimes it is easy to feel like we are the only ones making a meal of something which other people just take in their stride. I used to be so capable. I was never confident but I could brazen it out and act fairly confidently. Now I am a shadow of my former self.
Dear Saskia, with all this you still replied to my blog, thank you.
I hope you get this before you go tomorrow, as I would like to help; can I suggest you list everything down working from the top of your head down to the soles of your feet? List every little thing that is going on, put it on paper and leave it with your doctor. He may be able to help you with this later too.
Make another list of all the things you need to do and prioritise.
Put the plumber off until Tuesday, give yourself a chance, but do remember, he or she will not be looking at the state of your place, close doors to all rooms and just have the hallway through to the toilet. You will probably be asked to turn taps on etc.
I can relate to your loss and anger over the cause too. I have wiped what I wrote as it was about me, not you. Suffice to say I nearly lost my husband to cancer 30 years ago and lost my step-father just over a year ago.
Please take time for yourself, one step at a time, you can do this.
Soft hugs and ask your wonderful hubby for a cuddle, I am sure he will be happy to give you that.
I have just picked this up on my way up to bed. Thank you so much for your kind words and advice.
I had already made a sort of list which my husband has put in some semblance of order for me. He has a logical mind, whereas mine is all over the place especially at the moment! It needs more work so we'll have another go at it tomorrow.
I want to discuss with the Dr about my problems with peeing. Sorry to bore you but sometimes I am up every 20 mins or so for the first 2-3 or even 3-4 hours at night. It really gets me down. Sometimes I only just get to the loo in time and nearly pee before I get to sit down and sometimes I leak a bit after I've been. This has been going on for ages and it is getting me down so I really feel that I need to speak to the Dr about it, in the hope he can help. I only drink green tea and water but I do drink a lot but, even when I cut down, I still need to get up several times during the night. Over the years I have bee tested for diabetes and I am not diabetic so it isn't that.
I don't know why I told you all that .Sorry it is a bit personal, but I suppose I have kept it to myself ( apart from OH) for so long that it just came out!
Also, I fell on our stairs just before Christmas as my balance isn't what it was. I can trip over fresh air!!! Even when we are out with our dogs( I have to walk every day so the dogs make sure I get out!) and I use my walking stick I sometimes lose my balance. My feet somehow get crossed over and, at least with my stick, it gives me a bit of support so I can right myself again. I feel my GP needs to know this.
I don't usually bother the GP, as there is nothing much he can do, but with this ESA form hanging over me I thought I'd better bring him up to date, in case the assessors get in touch with him. The whole thing makes me incredibly anxious.
I do appreciate you taking the time to write to me, Sarah-Jane and I appreciate your advice.
Re:- loss and anger, I am assuming that you have also had an awful time with Drs, with regard to your husband and you have obviously lost your step-father very recently. Bereavement counsellors say that it takes a good 2 years, I think, for a loss to even really sink in, so just over a year ago really isn't very long. Grief is hard to bear isn't it? It is a shame that you deleted what you you had written, as I would be interested to hear about your experience. Perhaps you could write to me again? It is important to share our experiences and feelings and I think this site is a safe place to do that. I have come across a few judgemental comments on other people's blogs, which I think are unnecessary, unhelpful and in some cases downright hurtful. This is why I am a bit guarded about what I write, as I don't want anyone jumping down my throat in a judgemental way, as that would just finish me off! We all have to cope with enough negativity and criticisms from other people , without experiencing more on here. Thankfully most people on this site are like you and only post helpful, supportive comments.
I'll let you know how I get on tomorrow, Sarah-Jane.
I hate to hear of any of the members feeling so low and take it from me hun we have all been there. Until recently I have not really had anywhere to turn myself as I decided not to burden hubby with it all. He knows when things are bad so I do not really have to say anything. He even bought ma posh coffee maker so I can leave it on all day, so much easier. But having this site gives us that release that we are all looking for, so it is a good thing. Being able to share how we feel helps us to win the battle xxxxx
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