It has been a few days since I blogged as I have been in awful pain. It has been so bad I have been sick with it. Unfortunately being sick means I could not keep my pills down which made the pain worse which in turn made me even sicker. This sounds awful but I truly did not want to wake up when I finally managed to drop off for a few minutes.
It suddenly dawned on me the other night, that this is forever. I knew it was but it had not sunk in. It finally did and I do have to say I am really down right now.
I have tried to be very upbeat about this condition and tried not to let it get to me, even my doc could not believe I still managed to keep my sense of humour. That all went in a single moment and I came crashing down with a big bang. I am at rock bottom and dont know where to go from here. Is this it??? Is this all there is now? Stuck indoors in constant pain. Not even being able to make myself anything to eat. I do not want to live like this. I have always tried to be a good person so have no idea why God has chosen me for this. I have literally had enough now.
I am on Amytriptiline that is supposed to stop depression but right now it is not working. I have never felt so low. I am crying but even that hurts as I have really bad dry eyes so they sting like hell.
There is no food in the house at all. I cant just pop out and get some. Hubby is at work until 10.45pm tonight so no chance he will be able to get any. The dog needs feeding but I cant manage it so have to hope my son will do it, if he ever gets out of bed. I have no one around me to help. I could probably go shopping as Asda have scooters I can use BUT I cannot walk the full length of the car park and I do not have a disabled badge yet so cannot park near the doors. So today is another day of not eating. I would not mind but I dont lose weight. I am not sure if it is the pills or what but I can go days without food and do not lose weight. All that happens is I feel weaker.
People dont understand either. They seem to think as I look ok and am 'ONLY' in pain I can still cook. I cant. I have tried but I cannot hold a saucepan even without anything in it my wrists to refuse and give way. I cant even lift the bloody kettle. I feel bloody useless to be honest. I cant manage the simplest things that last year I used to moan about having to do and now I am desperate to do them.
The house is a tip. It is dirty and messy, hubby tries but he works alot plus does all the cooking when he is here and needs some time to unwind. He doesnt think of the fact that I have no clean clothes at all. He washes his own stuff, my son washes his but no one thinks of mine. If I do manage to get dressed, I have to wear dirty clothes half the time as I cant manage to get it to the washing machine.
I am sick of having to ask him to help me so have not had a shower for a week, my hair is thick with grease and I look awful. I could just curl up and die. It would be preferable to this. I need to fill in my disability forms but I cant write as holding a pen hurts too much. At least if I had that I could pay someone to come and do some house work and some shopping and maybe my washing etc. God it would be so nice to have clean underwear as not been able to wear any for over a week.
Talking of disability forms I do not know where to start. The thought of having to fight to get what I need is just too much. Why do they make it so hard for those that need it. My doc can vouch for how bad I am. How he is constantly upping my tablets. How I can barely walk a few feet. My physio is more than aware of how badly I am affected so why cant their word be enough. They know me, they know how I am affected. Some stranger talking to me for half an hour really is not going to be able to judge how my daily life is affected.
I have to have another trough crutch to help me around my home as with one I keep falling over. Outside waking is near impossible. I have no spatial awareness and trip over my crutches, and anything else that may be on the ground. I think things are further away than they are so kerbs, dips in the path etc cause me to end up on my backside or face. This is it. This is my life. From now on I have nothing much to look forward to except more pain, more dizziness, more shortness of breath, more falling over, more sickness, more and more nights of laying in agony hoping for some relief, a little sleep or a moment of no pain.
I dont feel as if I have a right to be here anymore. I am a drain on my family. I cannot do anything for them. My hubby tries to show he loves me but come one, no one wants to spend their live with a useless lump who cannot even do the simplest of things. This has stopped being a marriage and is now a one sided relationship where I give nothing but just seem to take and take. My son is becoming wild as I no longer have the energy to punish him when he has done something wrong.
I have lost my way. I have a big list of things that need doing but I cant do them and the ones I can do, I forget. I forget family members birthdays, so they then think I dont care, I forget to ring them, my daughter is 17 and lives 200 miles away and I forget to ring her. How she must hate me. My older sons never contact me and I keep meaning to ring and see how they and their kids are doing but then I forget straight away.
I want my family around me BUT I forget to contact them. How bad a mum am I.
So this is it. My life. Not much of one is it. Not one you would want to be part of. Even this has taken me 2hours to write as I cant type well anymore as my fingers hurt and my brain keeps forgetting what I want to write. If it doesnt make sense then sorry but I keep getting my words mixed up and although this has spell check it does not find missing words. I write in little blocks so I know what I have wrote and can check it all bit by bit.
I admire these people who just carry on laughing. I thought I could be like that too but I cant any longer. MY life as I knew it is over. This is the life I have now. A life of staring at the tv, wishing I would sleep and never wake up.
No dont worry I am not going to kill myself, although I would be lying if I said I had not thought about it but I would not do that to my family. I know they would be better off but they would end up blaming themselves, always wondering if they could have done something to help me more or make it easier for me. I would not do that to them. They deserve far more than that. They just dont deserve being lumbered with me.
It is hard to decide which is the lesser of two evils but this is what I chose. My son will be leaving home in a couple of years anyway and then I will ask social services if they can move me on so my darling husband has a chance to find someone who can be there for him for a change. He deserves to be happy.
Anyway, I am tired now so am going to go and try to get upstairs, if not I will try and rest on the sofa. I will try to write daily but it is hard as sometimes I forget the blog is here. It does help being able to get it out how I am feeling as I am not one for talking about emotions so this is my release. I apologise for being glum and depressive but it is how I feel right now.
Wednesday 27 July 2011
Saturday 23 July 2011
A little catch up
Well I wen to see the Doc. He did not want to discuss ME as he was more interested in my eye/gum infection. So two different lots of antibiotics for those. Plus he has upped my pain killers and Amytriptaline yet again. I am taking something like 12 pills at a time. It is silly.
Not blogged for a few days as have been in awful pain. The worst yet, some people call it a flare up. Myself I just think of it as bad days. The pain makes me feel sick, the sickness makes me hurt more so am stuck on a roundabout at the moment.
On a lighter note, i am feeling much happier in myself. I have realised that regardless of how hubby feels about my condition, it is me that is suffering it daily, not him and his opinion really should not matter.
The worse my symptoms become the more he whines about pins and needles or a pain in his back or how bad his cold is. If only for just one moment he could feel like I do day after day. he would soon shut up and realise a small bout of pins and needles or a small ache in his back or a simple cold is NOTHING compared to this. I would be grateful to feel like that.
I am trying to cheer myself up so am thinking of dying my hair. Have I mentioned that before as I cant remember. Anyway, I have ordered a hair colour stripper to see if that works. if it does I am going to dye my hair blond. I cant go to a hair dresser as the chairs hurts. I cannot lay backwards into the sinks and they take too long and would leave me in agony.
If I do it at home I can use my aids in the shower to wash hair and can sit in a comfy seat whilst waiting.
Plus if I cock it up and go tangerine colour I can send hubby out to buy me a dark dye really quickly :)
I have made many drastic hair disasters from seaweed green to orange stripped (blond dye really can cock up) I have also done some on purpose, Pink, orange and blond hair extensions. I thought they looked cool for all of about 2 minutes until I looked in a mirror. That was £300 down the drain.
I had acupressure off my Physio this week. I cried it hurt so much and have been really awful since then.
Have to go phone is ringing.
Toodlepip
Not blogged for a few days as have been in awful pain. The worst yet, some people call it a flare up. Myself I just think of it as bad days. The pain makes me feel sick, the sickness makes me hurt more so am stuck on a roundabout at the moment.
On a lighter note, i am feeling much happier in myself. I have realised that regardless of how hubby feels about my condition, it is me that is suffering it daily, not him and his opinion really should not matter.
The worse my symptoms become the more he whines about pins and needles or a pain in his back or how bad his cold is. If only for just one moment he could feel like I do day after day. he would soon shut up and realise a small bout of pins and needles or a small ache in his back or a simple cold is NOTHING compared to this. I would be grateful to feel like that.
I am trying to cheer myself up so am thinking of dying my hair. Have I mentioned that before as I cant remember. Anyway, I have ordered a hair colour stripper to see if that works. if it does I am going to dye my hair blond. I cant go to a hair dresser as the chairs hurts. I cannot lay backwards into the sinks and they take too long and would leave me in agony.
If I do it at home I can use my aids in the shower to wash hair and can sit in a comfy seat whilst waiting.
Plus if I cock it up and go tangerine colour I can send hubby out to buy me a dark dye really quickly :)
I have made many drastic hair disasters from seaweed green to orange stripped (blond dye really can cock up) I have also done some on purpose, Pink, orange and blond hair extensions. I thought they looked cool for all of about 2 minutes until I looked in a mirror. That was £300 down the drain.
I had acupressure off my Physio this week. I cried it hurt so much and have been really awful since then.
Have to go phone is ringing.
Toodlepip
Wednesday 20 July 2011
A waffle
Bloody chest infection is back and not letting up at all. To make it worse I also have yet another gum infection. I cannot get to the dentist as hubby is working and I really am in no fit state to drive. Mind you my dentist does not want to see me anyway until I get some of the pain under control as he cannot touch me without me screaming.
I have just found out I have to pay £350 excess on my insurance. I am so angry. Why should I pay just because some woman was not paying attention and changed lanes without looking in front of her 1st. Grrrr
I have missed a few days of blogging because my hands were so bad I could not type properly. My brain could not think of anything to write either so was no use asking hubby to type for me. I had lots to tell you all but it seems my memory wants to pretend it is on crack and has lost all cognitive thought.
I have started to become very aware lately that my spatial awareness is not quite what I thought it was. Not good at all. I keep tripping over things that I think are a distance away from me. Steps are a killer. Trying to come down when you are not sure where the next step is hurts. Yep, you guessed it, I was practicing my stuntman moves this morning and rolled down the last 7 stairs. A lovely view for my neighbours as the blinds were open. I was only wearing a bathrobe as wearing anything in bed is burning torture. SO I am laid at bottom of stairs, head down and bare arse and girlie bits on full view. It took me over 15mins to get upright again. I dont know if anyone saw me but do not want to know either. My poor neighbours.
Well hubby at work so it is another day stuck indoors until he comes home. Thankfully he is finishing early today as I have Physio and need to be taken to hospital.
This bit is the joke. If you know Derby hospital (the new one) you will know how bloody big it is. A healthy person will take 10 - 15 mins to walk from one end to the other so someone like me would never be able to do it. So what do the designers do? They build the rehabilitation unit at the very far end of the hospital.
Ok they do have vehicles to drive you down but that again is embarrassing. everyone knows if you are on one of them you are disabled and the bloody driver is constantly beeping the horn so everyone looks at you. Trying to get transport back to the entrance though is a nightmare and my Physio normally has to take me herself which she gets quite annoyed about. so today hubby is taking me so at least he can push me there and back in my own chair.
I know I have paragraphs on here were there should not be but it is for me and other Fibro/ME sufferers who cannot read big blocks of writing. Sounds a silly thing doesnt it but when your main hobby has always been reading it is a big thing. I was an avid reader, I loved Terry Pratchett and was also a big fan of Patricia Cornwell. Unfortunately books are not written for people like me and I can no longer read a book.
I have found a site online that lets you read books on there that only have about 20 sentences to a page which means I can read a little now and then but it is frustrating as I tend to forget what I have read anyway. Arghh, I used to read a book in two hours and sometime 3 an evening. I cannot comprehend how now I cannot manage at all. I feel as if I am losing my mind and really do worry I have Alzheimer's and not Fibro.
The nightly vomiting is still there even though I have pills to stop sickness. I hate vomiting out of my nose as it burns. I have been suffering badly from dizzy spells as well. It is hard to describe as its not just a dizzy feeling. My head feels weak and dizzy, my insides feel as if they are shaking, i feel sick and have on a few occasions actually passed out. My sugar levels have been checked and it is not that so I have app at Docs on Friday and I am going to insist that he finds out what is wrong as I am sick of everything being put down to Fibro when I know it isnt.
I guess now Docs think as I have this condition they do not need to look for anything else as they can put everything down to it. Sorry but that is NOT going to happen anymore. For too long I have let them just ignore me basically. It has taken me years just to get them to realise I had something wrong as the symptoms were mild for quite a while. It was only when the pain got so bad that a doc sent me in to hospital as my temp was too high as well. I am no longer going to sit and act like everything they say is gospel as I now know that half of them just cannot be arsed doing their jobs.
To anyone who has a condition do not allow docs to put every other thing you have wrong with you under the same condition. It often is nothing to do with it.
I am going to fill out my Dla forms soon but am going to get disability direct to do them with me as they know how to fill them out. I have decided I am going to fight them all the way as I know damn well they will refuse it to start with. I may be in pain, I may be emotionally and physically drained but I will no longer sit down and let anyone walk all over me. I have read and re read their guidelines and I am entitled. I cannot walk more than 50ft at all. I cannot dress myself most days. I cant even lift the kettle let alone a saucepan, between the shakes and the weak arms I would end up in hospital. I tried it not long ago and spilt alot of boiling water. I was just lucky I was on my perching stool so my legs were out of the way or I would have had nasty burns.
Oops this turned out longer than I thought so I had better sign off and sit and stare at daytime TV, omg why cant they put anything decent on during the day.
I have just found out I have to pay £350 excess on my insurance. I am so angry. Why should I pay just because some woman was not paying attention and changed lanes without looking in front of her 1st. Grrrr
I have missed a few days of blogging because my hands were so bad I could not type properly. My brain could not think of anything to write either so was no use asking hubby to type for me. I had lots to tell you all but it seems my memory wants to pretend it is on crack and has lost all cognitive thought.
I have started to become very aware lately that my spatial awareness is not quite what I thought it was. Not good at all. I keep tripping over things that I think are a distance away from me. Steps are a killer. Trying to come down when you are not sure where the next step is hurts. Yep, you guessed it, I was practicing my stuntman moves this morning and rolled down the last 7 stairs. A lovely view for my neighbours as the blinds were open. I was only wearing a bathrobe as wearing anything in bed is burning torture. SO I am laid at bottom of stairs, head down and bare arse and girlie bits on full view. It took me over 15mins to get upright again. I dont know if anyone saw me but do not want to know either. My poor neighbours.
Well hubby at work so it is another day stuck indoors until he comes home. Thankfully he is finishing early today as I have Physio and need to be taken to hospital.
This bit is the joke. If you know Derby hospital (the new one) you will know how bloody big it is. A healthy person will take 10 - 15 mins to walk from one end to the other so someone like me would never be able to do it. So what do the designers do? They build the rehabilitation unit at the very far end of the hospital.
Ok they do have vehicles to drive you down but that again is embarrassing. everyone knows if you are on one of them you are disabled and the bloody driver is constantly beeping the horn so everyone looks at you. Trying to get transport back to the entrance though is a nightmare and my Physio normally has to take me herself which she gets quite annoyed about. so today hubby is taking me so at least he can push me there and back in my own chair.
I know I have paragraphs on here were there should not be but it is for me and other Fibro/ME sufferers who cannot read big blocks of writing. Sounds a silly thing doesnt it but when your main hobby has always been reading it is a big thing. I was an avid reader, I loved Terry Pratchett and was also a big fan of Patricia Cornwell. Unfortunately books are not written for people like me and I can no longer read a book.
I have found a site online that lets you read books on there that only have about 20 sentences to a page which means I can read a little now and then but it is frustrating as I tend to forget what I have read anyway. Arghh, I used to read a book in two hours and sometime 3 an evening. I cannot comprehend how now I cannot manage at all. I feel as if I am losing my mind and really do worry I have Alzheimer's and not Fibro.
The nightly vomiting is still there even though I have pills to stop sickness. I hate vomiting out of my nose as it burns. I have been suffering badly from dizzy spells as well. It is hard to describe as its not just a dizzy feeling. My head feels weak and dizzy, my insides feel as if they are shaking, i feel sick and have on a few occasions actually passed out. My sugar levels have been checked and it is not that so I have app at Docs on Friday and I am going to insist that he finds out what is wrong as I am sick of everything being put down to Fibro when I know it isnt.
I guess now Docs think as I have this condition they do not need to look for anything else as they can put everything down to it. Sorry but that is NOT going to happen anymore. For too long I have let them just ignore me basically. It has taken me years just to get them to realise I had something wrong as the symptoms were mild for quite a while. It was only when the pain got so bad that a doc sent me in to hospital as my temp was too high as well. I am no longer going to sit and act like everything they say is gospel as I now know that half of them just cannot be arsed doing their jobs.
To anyone who has a condition do not allow docs to put every other thing you have wrong with you under the same condition. It often is nothing to do with it.
I am going to fill out my Dla forms soon but am going to get disability direct to do them with me as they know how to fill them out. I have decided I am going to fight them all the way as I know damn well they will refuse it to start with. I may be in pain, I may be emotionally and physically drained but I will no longer sit down and let anyone walk all over me. I have read and re read their guidelines and I am entitled. I cannot walk more than 50ft at all. I cannot dress myself most days. I cant even lift the kettle let alone a saucepan, between the shakes and the weak arms I would end up in hospital. I tried it not long ago and spilt alot of boiling water. I was just lucky I was on my perching stool so my legs were out of the way or I would have had nasty burns.
Oops this turned out longer than I thought so I had better sign off and sit and stare at daytime TV, omg why cant they put anything decent on during the day.
Sunday 17 July 2011
A good day???
My hubby left me to sleep in this morning. I think it may have sunk in how bad I am as whilst I slept he scrubbed the kitchen from top to bottom for me. I got up at 1pm today. OMG how bad is that. I wouldn't mind but I am still worn out as even though I was sleeping it was not the right kind of sleep. It was very fit full.
Anyway I have spent the afternoon on the sofa doing absolutely nothing.
Hubby ran me a bath as I thought I would give it one more try just to see if I could actually manage it on my own. NEVER AGAIN!!! I got stuck and being so bloody minded I refused to call for help. I managed to get my foot around the plug and empty the water out so could dry myself and the bath before throwing myself over the side. Not a pretty sight I can tell you. I fell onto the floor with my fat arse in the air, BUT HEY, I did it by myself. I must admit I do now wish I had asked for help and am going to stick to my shower seat in the shower from now on.
Hubby is also cooking me steak & kidney puds for tea and I am so hoping I can eat them and keep them in as have a lot of trouble keeping food inside me.
I hopefully get my kidney test results tomorrow so I have my fingers crossed for that. Will also be making an appointment with the Doc regarding finding out if I have ME/CFS as well.
Ok just a quick one today as feeling a bit tired and sore although nowhere near as bad as the past week.
Toodle pip
Anyway I have spent the afternoon on the sofa doing absolutely nothing.
Hubby ran me a bath as I thought I would give it one more try just to see if I could actually manage it on my own. NEVER AGAIN!!! I got stuck and being so bloody minded I refused to call for help. I managed to get my foot around the plug and empty the water out so could dry myself and the bath before throwing myself over the side. Not a pretty sight I can tell you. I fell onto the floor with my fat arse in the air, BUT HEY, I did it by myself. I must admit I do now wish I had asked for help and am going to stick to my shower seat in the shower from now on.
Hubby is also cooking me steak & kidney puds for tea and I am so hoping I can eat them and keep them in as have a lot of trouble keeping food inside me.
I hopefully get my kidney test results tomorrow so I have my fingers crossed for that. Will also be making an appointment with the Doc regarding finding out if I have ME/CFS as well.
Ok just a quick one today as feeling a bit tired and sore although nowhere near as bad as the past week.
Toodle pip
Saturday 16 July 2011
Sorry todays blog is a rant
Oh Jeez!!! I think I have finally hit rock bottom. I have never felt such pain in my life. I know a lot of people say that but for it is actually true. Every muscle in my body feels as if a knife has been pushed in and is twisting round and round. This sounds terrible but even the muscles in my Ladybits are in agony.
I am exhausted. Not in the 'I have had a hard day' way or even the I have run a marathon way but more in the way of I have nothing left. I feel like a deflated balloon. My brain is worn out, my body has nothing in it. It is not as if I don't want to do anything. I do. I just physically cant. It is as if someone has drained the life out of me and left this shell.
Lordy Lordy, all I seem to do is moan. I would much rather have something happy or funny to write about but at the moment I have no sense of humour. It is really hard to see the funny side of anything when, if you do laugh, every part of you cries out in pain and then you are too short of breath to talk.
I had an awful night, tossing and turning and crying out on the odd few times I did get to sleep.
I was chatting online to a nurse this morning and she has advised me to go back as it sounds like I have an underlying problem as well as the FM. She thinks from my symptoms I may well have M E?CFS to go along side the FM. OH bloody joy. Now I have to go back to Doc and try to re list my symptoms and tell him what she has said.
Apparently FM alone should not affect me this badly, it also does not cause dizziness or vomiting or the nasal and visual problems I have, whereas M E/CFS could explain it. I hope I find out one way or another as I do hate finally getting to sleep and then be woken with a mouthful of vomit and it gushing out of my nose. Urgh it really is horrible. Apparently it may also explain the over excessive sweating even when it is freezing cold.
So back to visit Doc again this week, as my Physio has said exactly the same thing. As they said, a lot of Docs once they get a diagnosis don't bother looking for anything and blame everything on the FM. Unfortunately my Rheumy diagnosed me with FM and I need to see someone else to be diagnosed with M E/CFS.
What a bloody palaver. All I want is the correct diagnosis so I get the correct treatment and hopefully get rid of some of this pain.
I am exhausted. Not in the 'I have had a hard day' way or even the I have run a marathon way but more in the way of I have nothing left. I feel like a deflated balloon. My brain is worn out, my body has nothing in it. It is not as if I don't want to do anything. I do. I just physically cant. It is as if someone has drained the life out of me and left this shell.
Lordy Lordy, all I seem to do is moan. I would much rather have something happy or funny to write about but at the moment I have no sense of humour. It is really hard to see the funny side of anything when, if you do laugh, every part of you cries out in pain and then you are too short of breath to talk.
I had an awful night, tossing and turning and crying out on the odd few times I did get to sleep.
I was chatting online to a nurse this morning and she has advised me to go back as it sounds like I have an underlying problem as well as the FM. She thinks from my symptoms I may well have M E?CFS to go along side the FM. OH bloody joy. Now I have to go back to Doc and try to re list my symptoms and tell him what she has said.
Apparently FM alone should not affect me this badly, it also does not cause dizziness or vomiting or the nasal and visual problems I have, whereas M E/CFS could explain it. I hope I find out one way or another as I do hate finally getting to sleep and then be woken with a mouthful of vomit and it gushing out of my nose. Urgh it really is horrible. Apparently it may also explain the over excessive sweating even when it is freezing cold.
So back to visit Doc again this week, as my Physio has said exactly the same thing. As they said, a lot of Docs once they get a diagnosis don't bother looking for anything and blame everything on the FM. Unfortunately my Rheumy diagnosed me with FM and I need to see someone else to be diagnosed with M E/CFS.
What a bloody palaver. All I want is the correct diagnosis so I get the correct treatment and hopefully get rid of some of this pain.
Friday 15 July 2011
Bad day
Having a very shitty day today. I have come to the realisation that my hubby really does not or cannot understand or even begin to understand just what I am going through. There have been lots of issues over the past few years which has left me with no trust for him which could have been worked on. It sounds selfish but he was due to weeks off work for shutdown and I was looking forward to actually spending some quality time with him. Instead he has volunteered to work both weeks so he does not have to be at home. It is not for the money as he would have been paid anyway. He just does not seem to want to be around me anymore since I have become this way. So I have spoken to social services to see what my options are on getting a bungalow to rent and they are coming to see me next week.
I dont really see any other option unless things sort themselves out, which to be honest I can no longer see happening.
I am at work today and trying to force myself into corsets and 6inch heels has left me in absolute agony. The pain is so bad that I feel sick. yet again I have not been able to eat due to the pain and have come to realise I can no longer work. I did not want to give up as the money is fantastic and the work is so easy. I just sit still or lay still with the odd movement into different positions. Its the getting into the outfits that has become unpractical. Somehow I dont think I will get paid for shots of me in a slobby bathrobe and granny slippers. Although it may well be worth checking around as I now know there is a market for many different fetishes and the old slob look may well sell.
As you can tell I am on a bit of a downer today as feel so isolated and alone and am not really one for posting my problems on forums as I just feel as if I am always moaning
I dont really see any other option unless things sort themselves out, which to be honest I can no longer see happening.
I am at work today and trying to force myself into corsets and 6inch heels has left me in absolute agony. The pain is so bad that I feel sick. yet again I have not been able to eat due to the pain and have come to realise I can no longer work. I did not want to give up as the money is fantastic and the work is so easy. I just sit still or lay still with the odd movement into different positions. Its the getting into the outfits that has become unpractical. Somehow I dont think I will get paid for shots of me in a slobby bathrobe and granny slippers. Although it may well be worth checking around as I now know there is a market for many different fetishes and the old slob look may well sell.
As you can tell I am on a bit of a downer today as feel so isolated and alone and am not really one for posting my problems on forums as I just feel as if I am always moaning
Thursday 14 July 2011
off work again
Oh God, I feel terrible today. Its half past 10 and I have just managed to get out of bed. On top of my condition I also have a cold which seems to have now turned into a chest infection. All I can say is I must have been a really evil person in my past life. Ghengis Khan springs to mind. Either that or him upstairs is having a bloody great laugh at my expense. This blog will take a little longer to write than normal as my fingers feel almost numb, tingly and it is like trying to type with balloons stuck on the ends of my wrist.
My darling Hubby is trying so hard to understand but he just cant. I can see the look on his face when I say I cannot possibly work today (I am self employed so its not a problem that way). Its a look that says I don't know why as you normally manage. Yeah right like I look suitable for my work. I am a full figured lingerie & fetish model. Try looking sexy when your whole body feels like lead, you have chronic shakes, cannot stop sweating (under lots of lights it is even worse). There is also no way on earth I could put my feet into 6 inch heels, lets alone manage to pull on an outfit made of PVC. Ok so mostly they have people to dress me but the thought of anyone touching my skin even makes me tremble in fear as even the softest touch feels as if someone has a blow torch against my skin.
Anyway, I made it to the sofa and took my pills. Hubby has gone to shop for bits I will need whilst he has gone and I thought I had better go online and sort out all my emails etc. I could not even read them as have really blurred vision so though I would blog instead.
Oh. I forgot to say what happened yesterday. I am so embarrassed and thankfully no one I know reads this so can put it. I wet myself. That's right you did read it correctly. I needed a pee and being the stubborn old bat I am, I decided I was going to use the toilet and tried to get upstairs quick enough but was in so much pain I did not quite make it in time. How bad is that. I can laugh now but I was so upset at the time and still have not told hubby.
I thought I had perhaps passed the grieving stage and was now at the anger stage but I was wrong. I am still grieving. I want the old me back. The one who worked every hour God sent, Who was always popping into town shopping, who loved her life and although hated it always made sure the house was clean, the girl that used to go out with the lads and be the life and soul. I cant even tolerate the smell of alcohol now let alone manage to go out. Hubby took me clothes shopping the other day and I realised clothes shops are NOT designed for an electric wheelchair and after just one shop I was worn out and wanted to go home.
The only thing I still do the same is get my nails done. I do not feel human without them. I cant even get my hair done in a salon as it hurts to sit there for that long so I have took to just cutting my own fringe.
I am so bored. How do people voluntarily stay home and not work? Day 4 of daytime TV and I want to cut my own throat.
I know alot of people don't understand this condition and often say to me, "it must be great never having to clean u, do the washing, cook dinner etc and to be able to lounge on the sofa or in bed all day". If only they knew. Yes I am at the moment 'lounging' on the sofa. I cannot stay in one position for long as the pain gets so bad. Moving position causes even more pain. I cant get a drink when I am thirsty and pee myself trying to get to the loo. It is also great fun not being able to go to bed and sometimes having to sleep on a blow up bed in the lounge. brilliant, just what I always dreamed of. Idiots. Actually that is harsh, they are not idiots they just don't get it.
My sex life has all but disappeared as even a gentle hug is agony.
I do still work if I have an easy job on that I will be capable of. Basically ones that are sitting or laying down. otherwise I am housebound. It is not a life as such anymore. The one thing I used to love to do in my spare time was read. I would read anything. Now I read part of a page and by the time I reach the bottom I have forgotten what I just read.
take aways are nice BUT who wants to have to eat them 5 days on the trot every fortnight as hubby is on late shift. I don't so last night I got son a takeaway and I went without food again.
I am going back to see the Doc to see if I can try Lyrica as so many others seem to find this works a little bit. He will probably say no though as I have to keep having blood tests as there seems to be something wrong with my kidneys and instead of telling me what is wrong they just send me for more tests. Arrghh!!!
Ah well that is my morning blog/rant finished for now. If anything interesting happens in the day, I will come back on and let you know.
My darling Hubby is trying so hard to understand but he just cant. I can see the look on his face when I say I cannot possibly work today (I am self employed so its not a problem that way). Its a look that says I don't know why as you normally manage. Yeah right like I look suitable for my work. I am a full figured lingerie & fetish model. Try looking sexy when your whole body feels like lead, you have chronic shakes, cannot stop sweating (under lots of lights it is even worse). There is also no way on earth I could put my feet into 6 inch heels, lets alone manage to pull on an outfit made of PVC. Ok so mostly they have people to dress me but the thought of anyone touching my skin even makes me tremble in fear as even the softest touch feels as if someone has a blow torch against my skin.
Anyway, I made it to the sofa and took my pills. Hubby has gone to shop for bits I will need whilst he has gone and I thought I had better go online and sort out all my emails etc. I could not even read them as have really blurred vision so though I would blog instead.
Oh. I forgot to say what happened yesterday. I am so embarrassed and thankfully no one I know reads this so can put it. I wet myself. That's right you did read it correctly. I needed a pee and being the stubborn old bat I am, I decided I was going to use the toilet and tried to get upstairs quick enough but was in so much pain I did not quite make it in time. How bad is that. I can laugh now but I was so upset at the time and still have not told hubby.
I thought I had perhaps passed the grieving stage and was now at the anger stage but I was wrong. I am still grieving. I want the old me back. The one who worked every hour God sent, Who was always popping into town shopping, who loved her life and although hated it always made sure the house was clean, the girl that used to go out with the lads and be the life and soul. I cant even tolerate the smell of alcohol now let alone manage to go out. Hubby took me clothes shopping the other day and I realised clothes shops are NOT designed for an electric wheelchair and after just one shop I was worn out and wanted to go home.
The only thing I still do the same is get my nails done. I do not feel human without them. I cant even get my hair done in a salon as it hurts to sit there for that long so I have took to just cutting my own fringe.
I am so bored. How do people voluntarily stay home and not work? Day 4 of daytime TV and I want to cut my own throat.
I know alot of people don't understand this condition and often say to me, "it must be great never having to clean u, do the washing, cook dinner etc and to be able to lounge on the sofa or in bed all day". If only they knew. Yes I am at the moment 'lounging' on the sofa. I cannot stay in one position for long as the pain gets so bad. Moving position causes even more pain. I cant get a drink when I am thirsty and pee myself trying to get to the loo. It is also great fun not being able to go to bed and sometimes having to sleep on a blow up bed in the lounge. brilliant, just what I always dreamed of. Idiots. Actually that is harsh, they are not idiots they just don't get it.
My sex life has all but disappeared as even a gentle hug is agony.
I do still work if I have an easy job on that I will be capable of. Basically ones that are sitting or laying down. otherwise I am housebound. It is not a life as such anymore. The one thing I used to love to do in my spare time was read. I would read anything. Now I read part of a page and by the time I reach the bottom I have forgotten what I just read.
take aways are nice BUT who wants to have to eat them 5 days on the trot every fortnight as hubby is on late shift. I don't so last night I got son a takeaway and I went without food again.
I am going back to see the Doc to see if I can try Lyrica as so many others seem to find this works a little bit. He will probably say no though as I have to keep having blood tests as there seems to be something wrong with my kidneys and instead of telling me what is wrong they just send me for more tests. Arrghh!!!
Ah well that is my morning blog/rant finished for now. If anything interesting happens in the day, I will come back on and let you know.
Wednesday 13 July 2011
hopping frog, thankyou cat
Well I finally managed to drag myself downstairs before 11am. Hooray for me. Feel as if I have flu, although is probably just a cold, it just knocks me for six now. Hubby packed off to work after he had been to shop for everything I need for the day, Bless him.
Sat updating my blog when in comes neffie, one of our serengeti cats with a bloody great Frog/Toad in her mouth. ARRGHH. I have a bit of a phobia about these creatures and become even more short of breath and very sick when they are near me. Neffie proudly comes right up to my feet with this thing squawking in her mouth (did you know they could scream, I didnt). She is mewing at it as it wouldnt move and she wanted to play. I am by now ringing my hubby almost in tears (no help he just laughed). Bearing in mind I can hardly move today, I grab the broom and a towel and try and shoo the bloody thing out. Soon as it moves neffie once again leaps on it, picks it up and proudly walks back to me. Now I am as far back on the sofa as I can be shooing her away with the broom, trying not to be sick or cry. Finally I get her to take it back outside and she took it next door.
Will serve them right as they are always feeding her (she has dodgy tummy so should not be fed treats etc). They can sort out this bloody great big frog/toad as no doubt my darling cat will dump it into next doors house somewhere and forget about it if she sees something more interesting, like a fly.
I am now on the sofa, wishing I could get back upstairs but cant. I want to cry but that wont help and will make me feel worse. I have almost lost my voice so cant even shout for my son to help me and the wonderful 15yr old that he is, he has his phone on silent.
Hubby is on lates today so unless a miracle happens and my son cooks tea, (more chance of me becoming a prima ballerina) then it is takeaway again for tea tonight.
I am sure if I miraculously got better the local take aways would go out of business. It does not matter if we ring the chinese, the indian or the local burger/kebab bar, they all know my address and what I am going to order.
I have been like this now for 5months and each day seems to feel worse than the last. I know it is trial and error until they can find the right meds to ease the pain a bit but right now it feels as if it will never happen.
I have been told to file for disability but I do not know if I have the energy for that right now as I have been told I will have to fight to get it even though I am one of those that really actually deserve it.
How is that right? I know lots of people who claim it yet they can all walk and over half of them work as bloody builders! Yet me, who can hardly walk at all and is practically housebound has to fight to get it.
I think I may need to get someone to fight for me as I do not have the strength at all.
I am dying for a wee (sorry) but really hate using the commode and just want to use the normal loo for a change. I also need a shower but as hubby is on lates and my friend is on holiday for a week that wont happen today.
I never understood before how much in life I took for granted or how much I wasted what I had. To be able to dress myself without pain, breaking into hot sweats (missed that off the list earlier) and feeling weak and exhausted would be wonderful. I have had to buy new clothes, with elastic waist so can get skirt/trousers on, and tops with no buttons or zips so it is easier for hubby to slip onto me. I cant do it as cant raise my arms high enough.
OH if anyone out there wants to design a large cupped bra that is easy to put on I will definitely buy it as most days I have to go bra less. For those of you with nice petite breasts you may wonder what the problem is, well for us with whoppers it is a major problem, it causes back ache,we get sores under them where the skin rubs so a bra is a necessity.
Anyway I had better sign off as alarm has gone so it is pill time. I am surprised I dont rattle the amount I throw down my throat everyday. Catch you later on x
Sat updating my blog when in comes neffie, one of our serengeti cats with a bloody great Frog/Toad in her mouth. ARRGHH. I have a bit of a phobia about these creatures and become even more short of breath and very sick when they are near me. Neffie proudly comes right up to my feet with this thing squawking in her mouth (did you know they could scream, I didnt). She is mewing at it as it wouldnt move and she wanted to play. I am by now ringing my hubby almost in tears (no help he just laughed). Bearing in mind I can hardly move today, I grab the broom and a towel and try and shoo the bloody thing out. Soon as it moves neffie once again leaps on it, picks it up and proudly walks back to me. Now I am as far back on the sofa as I can be shooing her away with the broom, trying not to be sick or cry. Finally I get her to take it back outside and she took it next door.
Will serve them right as they are always feeding her (she has dodgy tummy so should not be fed treats etc). They can sort out this bloody great big frog/toad as no doubt my darling cat will dump it into next doors house somewhere and forget about it if she sees something more interesting, like a fly.
I am now on the sofa, wishing I could get back upstairs but cant. I want to cry but that wont help and will make me feel worse. I have almost lost my voice so cant even shout for my son to help me and the wonderful 15yr old that he is, he has his phone on silent.
Hubby is on lates today so unless a miracle happens and my son cooks tea, (more chance of me becoming a prima ballerina) then it is takeaway again for tea tonight.
I am sure if I miraculously got better the local take aways would go out of business. It does not matter if we ring the chinese, the indian or the local burger/kebab bar, they all know my address and what I am going to order.
I have been like this now for 5months and each day seems to feel worse than the last. I know it is trial and error until they can find the right meds to ease the pain a bit but right now it feels as if it will never happen.
I have been told to file for disability but I do not know if I have the energy for that right now as I have been told I will have to fight to get it even though I am one of those that really actually deserve it.
How is that right? I know lots of people who claim it yet they can all walk and over half of them work as bloody builders! Yet me, who can hardly walk at all and is practically housebound has to fight to get it.
I think I may need to get someone to fight for me as I do not have the strength at all.
I am dying for a wee (sorry) but really hate using the commode and just want to use the normal loo for a change. I also need a shower but as hubby is on lates and my friend is on holiday for a week that wont happen today.
I never understood before how much in life I took for granted or how much I wasted what I had. To be able to dress myself without pain, breaking into hot sweats (missed that off the list earlier) and feeling weak and exhausted would be wonderful. I have had to buy new clothes, with elastic waist so can get skirt/trousers on, and tops with no buttons or zips so it is easier for hubby to slip onto me. I cant do it as cant raise my arms high enough.
OH if anyone out there wants to design a large cupped bra that is easy to put on I will definitely buy it as most days I have to go bra less. For those of you with nice petite breasts you may wonder what the problem is, well for us with whoppers it is a major problem, it causes back ache,we get sores under them where the skin rubs so a bra is a necessity.
Anyway I had better sign off as alarm has gone so it is pill time. I am surprised I dont rattle the amount I throw down my throat everyday. Catch you later on x
A bit about my condition
Most people have either never heard of Fibromyalgia and Polyarthralgia and those that have seem to think it is all in the mind. Well believe me my mind could never have been this creative or sadistic. In fact I doubt many peoples minds would be. I will list a few of the symptoms I have below so you can see what I mean.
Severe pain in every muscle and joint in my body.
Inability to move joints easily.
Limbs feel as though made of lead.
Headaches,
dizziness
pins and needles over limbs
muscle cramps in arms legs, neck and stomach,
Severe insomnia (by severe I mean lucky to get one hour a night)
chronic fatigue. (Imagine every day feeling as if you have swine flu you are that exhausted)
Muscle spasms. not little jumps but where your whole arm or leg just flies out on its own.
Inability to use hands properly
Cant lift things as wrists give way
Unable to walk more than 20ft and thats with a trough crutch as you cant use normal crutches.
Falling over all the time as you seem to have lost all co ordination or your joints just buckle.
Not being able to wash yourself as cant lift arms, need help to get into shower and wash even with bath seat and hands rails.
Stairs are my worst enemy and even with extra rails can take half an hour or more to get up them to go to toilet, which is not great considering irritable bowel is part of fibro.
Then we get to FIBROFOG. OMG where did that come from. I was always miss organised, miss perfect speller and the one who could remember just about everything. Now, I forget to take my pills, dont ask me to remember your name as it wont happen, in fact in the doctors the other day they were calling MY name out and I thought I recognised it but did not realise it was me. You can ask me to do something but you can bet your arse I will forget to do it. My life consists of yellow post it notes everywhere just so I can remember anything.
I can rarely drive now as am rarely well enough to feel safe behind the wheel so am pretty much housebound until my hubby is home from work. I do have an electric wheelchair but live at the bottom of a hill that is too steep for it to get up. I also have a wheelchair that he can push me in but again I have to rely on him.
Thank god for my Occupational therapist and the bits she provided for me or he would have to wipe my bum too :)
The list above is just SOME of the symptoms of this condition and there are many more but I am having a fog day so will tell you about them when I remember. Thank god for spell check or none of this would make sense to as even basic things like spelling or getting the words right is now beyond me. Ok from now on my blogs will be about my day and how it is affected. I just felt I needed to get this out of the way first, so that you had a bit of understanding about what I will be blogging about and perhaps understand if some of what I write does not make sense.
Severe pain in every muscle and joint in my body.
Inability to move joints easily.
Limbs feel as though made of lead.
Headaches,
dizziness
pins and needles over limbs
muscle cramps in arms legs, neck and stomach,
Severe insomnia (by severe I mean lucky to get one hour a night)
chronic fatigue. (Imagine every day feeling as if you have swine flu you are that exhausted)
Muscle spasms. not little jumps but where your whole arm or leg just flies out on its own.
Inability to use hands properly
Cant lift things as wrists give way
Unable to walk more than 20ft and thats with a trough crutch as you cant use normal crutches.
Falling over all the time as you seem to have lost all co ordination or your joints just buckle.
Not being able to wash yourself as cant lift arms, need help to get into shower and wash even with bath seat and hands rails.
Stairs are my worst enemy and even with extra rails can take half an hour or more to get up them to go to toilet, which is not great considering irritable bowel is part of fibro.
Then we get to FIBROFOG. OMG where did that come from. I was always miss organised, miss perfect speller and the one who could remember just about everything. Now, I forget to take my pills, dont ask me to remember your name as it wont happen, in fact in the doctors the other day they were calling MY name out and I thought I recognised it but did not realise it was me. You can ask me to do something but you can bet your arse I will forget to do it. My life consists of yellow post it notes everywhere just so I can remember anything.
I can rarely drive now as am rarely well enough to feel safe behind the wheel so am pretty much housebound until my hubby is home from work. I do have an electric wheelchair but live at the bottom of a hill that is too steep for it to get up. I also have a wheelchair that he can push me in but again I have to rely on him.
Thank god for my Occupational therapist and the bits she provided for me or he would have to wipe my bum too :)
The list above is just SOME of the symptoms of this condition and there are many more but I am having a fog day so will tell you about them when I remember. Thank god for spell check or none of this would make sense to as even basic things like spelling or getting the words right is now beyond me. Ok from now on my blogs will be about my day and how it is affected. I just felt I needed to get this out of the way first, so that you had a bit of understanding about what I will be blogging about and perhaps understand if some of what I write does not make sense.
Tuesday 12 July 2011
Hello & welcome to my 1st ever blog
Hi I am Nette a 42 year old woman with a passion for the life I had until recently. I have been told writing a blog may help me come to terms with the life I have now left behind me. So here goes.
Be prepared for alot of whinging, some moaning and hopefully some funny bits interspersed throughout.
I have been suffering from unknown tiredness for many years. My mum just said I was lazy, mind you so did my husband. I have also been in and out of hospital for severe pains of unknown origin. I have had unnessessary knee surgery, arm problems, stomach pains etc all that have added to my file of hyperchondria. Funny how now the Docs cannot do enough for me. I have had tests to see why when everyone is cold I am in barely any clothing and sweating like a pig. Yes I know Ladies are supposed to perspire but believe me I was sweating.
I guess you could say that at the moment I am still going through the grieving period. Sounds silly doesnt it. grieving because I have a condition. It is alas true. I am grieving for the me I have lost. I was the life and soul. In the village I live the guys always say it is only a fun night out when I am there. I suppose I did liven them all up as I loved nothing more than a few drinks, a dance and to partaaayy!!!.
Now, I cant drink full stop. even the smell of alcohol makes me vomit. I am also not much of a party girl considering I can only walk for a minute or two before I am in agony or more embarrassing I fall over.
I am grieving the fact that I cant even pop to the shop anymore. I cant even get to the loo very easily. I have to rely on my hubby for most things. Things you take for granted, like getting a drink or something to eat.
Ok, thats enough for now as my hands hurt so much and I have spent 40mins just checking I have spelt everything correctly as my mind is all fuddled today. I will be back tomorrow to give you a little more insight into my life before I start blogging about daily things.
If you have read this then thankyou for being so patient and reading my ramblings.
Be prepared for alot of whinging, some moaning and hopefully some funny bits interspersed throughout.
I have been suffering from unknown tiredness for many years. My mum just said I was lazy, mind you so did my husband. I have also been in and out of hospital for severe pains of unknown origin. I have had unnessessary knee surgery, arm problems, stomach pains etc all that have added to my file of hyperchondria. Funny how now the Docs cannot do enough for me. I have had tests to see why when everyone is cold I am in barely any clothing and sweating like a pig. Yes I know Ladies are supposed to perspire but believe me I was sweating.
I guess you could say that at the moment I am still going through the grieving period. Sounds silly doesnt it. grieving because I have a condition. It is alas true. I am grieving for the me I have lost. I was the life and soul. In the village I live the guys always say it is only a fun night out when I am there. I suppose I did liven them all up as I loved nothing more than a few drinks, a dance and to partaaayy!!!.
Now, I cant drink full stop. even the smell of alcohol makes me vomit. I am also not much of a party girl considering I can only walk for a minute or two before I am in agony or more embarrassing I fall over.
I am grieving the fact that I cant even pop to the shop anymore. I cant even get to the loo very easily. I have to rely on my hubby for most things. Things you take for granted, like getting a drink or something to eat.
Ok, thats enough for now as my hands hurt so much and I have spent 40mins just checking I have spelt everything correctly as my mind is all fuddled today. I will be back tomorrow to give you a little more insight into my life before I start blogging about daily things.
If you have read this then thankyou for being so patient and reading my ramblings.
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