Sorry I haven't updated since thursday. I had a really bad day yesterday. I had a huge argument with my mum, which just made me so upset tand the rest of the day was just shocking.
I didn't get up yesterday morning, i just felt so exhausted. I needed to have my hair straightened but needed someone to do it for me. Mum was going to do it, but when she came around, I was in a foul mood. Very frustrated and not in the mood for feeling ill again. She told me to stop stropping or she would go home, so i told her to go home! She did and we didn't talk all day. I went back to bed a cried all morning. I felt so angry, upset and mad that I had got myself into such a state.
Although trying to explain how you feel to a none pain ill person is like trying to explain sea sickness to someone who has never been on a boat! Making myself clear is the hardest thing for me, especially to my family. I always do it in a backwards horrible way, usually ending in an argument.
Anyway, I apologised for my shocking behaviour and now all is well on the family front.
I've decided that my next challenge is how to cope on my own with May. It's not so bad at home because she's very indepentant, but getting to and from the car is a nightmare. Lifting in and out, bags and the kitchen sink. I don't want to wish her age away, but I can't wait till I can say to her 'May, get in the car!'.
Today has been a better day, i've actually been out this morning! First time in 5 days. Hopefully on the right track. I've got things planned this week, like housework and dentist on Tuesday! I've just got to remember not to do too much or i'll over do it again and be back to squre one.
I can't believe it is saturday already, where does time go?
p.s I don't have spell check on my mac so i am sorry!
Saturday, 28 February 2009
Thursday, 26 February 2009
Again, not a good day! Really painful hands today so won't be able to type for long. I realised that may last few blogs have been very whiny. So I'm sorry, it's not the intention to be sad and morbid. I want my blogs to be insightful and humorous, not sad and depressing. I will try to improve on this. And if all else fails I will just post a funny picture or something!
We had a leak in the bathroom this morning....I decided after 3 days of being in bed to have a nice hot deep bath. Jim has to help me in and out, so while i was soaking, May was running up and down the hall way in her walker and Jim is talking to me sat on the bath. The bath was very full and started to run down the overflow. Jim said that it didn't sound right, it sounded like it was leaking. I told him to stop being so silly, what on earth does a leak sound like??? 15 mins later after he washed my hair for me, he went sown to the kitchen directly below the bathroom. The floor was an inch under water! Oops. He was right, it had leaked! I felt so bad, but never mind, it got fixed and all was better.
I still have to teach him how to use the straighteners!
That's me done for today. Hopefully tomorrow is better.
We had a leak in the bathroom this morning....I decided after 3 days of being in bed to have a nice hot deep bath. Jim has to help me in and out, so while i was soaking, May was running up and down the hall way in her walker and Jim is talking to me sat on the bath. The bath was very full and started to run down the overflow. Jim said that it didn't sound right, it sounded like it was leaking. I told him to stop being so silly, what on earth does a leak sound like??? 15 mins later after he washed my hair for me, he went sown to the kitchen directly below the bathroom. The floor was an inch under water! Oops. He was right, it had leaked! I felt so bad, but never mind, it got fixed and all was better.
I still have to teach him how to use the straighteners!
That's me done for today. Hopefully tomorrow is better.
Wednesday, 25 February 2009
Day Three
I was thinking about what I said yesterday, I don't think people understand exactly what our invisible illnesses really do to us.
I've spent the last few years trying to hide my illness in fear that people will not believe what I have. When I have been asked how I am, I just say 'I'm fine' when really I am not. I think this has been because I have some fear for what people think and want to be accepted. Being different is very hard and is hard to come to terms with.
Today, I have been poorly again. I have shocking shooting pains in my arms and wrists, not to mention the back ache. I am currently sat on a heat pad in an attempt to sooth the pain, is it working - No, but my butt is nice and warm! The only time i feel like that now is when I've had a good dose of steroids! LOL. I'm currently taking codeine (note to others - be careful, it bungs you up to no end. I felt like I was giving birth again! sorry for the detail but feel it important to warn other!) as well as another 20 tablets a day. Problem is half of them you need to take with food so I end up eating all day long just so I can take my tablets.
May has gone to her grandmother's again. Yesterday grandma noticed a tooth coming through, finally she is getting some teeth! She has been teething since she was three months old. Again I can't stop feeling bad that I can't look after her. I worry that May is unhappy. Me being paranoid again.
I also feel depressed, seeing the same four walls for a week is horrible. I just want to go back 10 years when I felt normal. I always imagine walking on a beautiful spring day, sun shining with not a care in the world. Was the world really like that when i was a child or was it that I lived in lar lar land. I think maybe the later, my mum and dad obviously did a good job.
Jim is out at work and I have to try to arrange to get to the bank, another job I hate. Standing in a queue waiting for Mr money man at the front of the queue who seems to think he has all the time in the world and so has everyone else behind him. Wanting to scream because of the pain, we stand patiently waiting to take our turn! What is with this country and queue's???
My mum is picking me up when she finishes work at 2pm so that we can go get May and bring her home!
I've got to go make myself presentable to the world now, so that I don't scare anyone! This takes a while. I may update later, I'll see how I feel! Bye for now!
I've spent the last few years trying to hide my illness in fear that people will not believe what I have. When I have been asked how I am, I just say 'I'm fine' when really I am not. I think this has been because I have some fear for what people think and want to be accepted. Being different is very hard and is hard to come to terms with.
Today, I have been poorly again. I have shocking shooting pains in my arms and wrists, not to mention the back ache. I am currently sat on a heat pad in an attempt to sooth the pain, is it working - No, but my butt is nice and warm! The only time i feel like that now is when I've had a good dose of steroids! LOL. I'm currently taking codeine (note to others - be careful, it bungs you up to no end. I felt like I was giving birth again! sorry for the detail but feel it important to warn other!) as well as another 20 tablets a day. Problem is half of them you need to take with food so I end up eating all day long just so I can take my tablets.
May has gone to her grandmother's again. Yesterday grandma noticed a tooth coming through, finally she is getting some teeth! She has been teething since she was three months old. Again I can't stop feeling bad that I can't look after her. I worry that May is unhappy. Me being paranoid again.
I also feel depressed, seeing the same four walls for a week is horrible. I just want to go back 10 years when I felt normal. I always imagine walking on a beautiful spring day, sun shining with not a care in the world. Was the world really like that when i was a child or was it that I lived in lar lar land. I think maybe the later, my mum and dad obviously did a good job.
Jim is out at work and I have to try to arrange to get to the bank, another job I hate. Standing in a queue waiting for Mr money man at the front of the queue who seems to think he has all the time in the world and so has everyone else behind him. Wanting to scream because of the pain, we stand patiently waiting to take our turn! What is with this country and queue's???
My mum is picking me up when she finishes work at 2pm so that we can go get May and bring her home!
I've got to go make myself presentable to the world now, so that I don't scare anyone! This takes a while. I may update later, I'll see how I feel! Bye for now!
Tuesday, 24 February 2009
Day Two
Good Afternoon all.
Well another day of not doing very much. May has yet again had to go to Grandma's to be looked after. I really hate having to rely on others to do what I should be able to do. I am mummy and I want to be able to do things for myself and May. It makes me feel like a bad mum, and that I'm losing the bond between me and her. Life is so unfair!
So what do us 'invisible' do all day? On a bad day I sit and do nothing, and on a good day I 'over do it' and fit in as much as I can. Why do we do that to ourselves? I often wonder to myself if my illness is 'in my head' and that I'm just a paranoid freak but then on days like today when I'm in agony, i know it's there. I watched Jeremy Kyle this morning (rare because i really hate the programme!) but anyway, he was talking to people who have deformities and how people treat them. It was shocking to hear what some people have to go through. How people stare and make comments. It occurred to me that unless you are 'normal', people don't accept you either way. I've been in situations when wearing my hand braces that people look at you daft, and I feel that people to stare and make comments behind your back. It's a horrible feeling! Bringing on another point.....
We shouldn't have to spend our time trying to convince other people we are ill. I think we live in a society when no one trusts anyone anymore. An example of this is the benefits system, it's so darn hard. The forms for anything are so difficult and generic that it's impossible to fill it out. I've just received confirmation of my DLA. I now receive middle rate care and high rate mobility. I was awarded it original in 2006. In November 2008, it was due for renewal. Simple thinking me thought that this would be an easy process.....oh how wrong I was. I completed the form with the help of my husband, sent it off...to be told that I would not be award anything because I no longer qualify! I asked them how that can be if my condition hasn't changed? (confirmed also by my GP!) They couldn't give me an answer. Fortunately, I have a very understanding doctor who wrote them a fantastic letter on my behalf. This worked and eventually was awarded dla till 2011. What a flippin hastle? I understand that they have to be careful and that people in general do take the mick out of the system, but they seem to tar everyone with the same brush. Is it just me who things the system doesn't work?
Okay rant over! Seriously though...where did it all go wrong?
My plans for the rest of the day.....to sit and watch what I've taped in Sky plus (If you haven't got it yet...get it! It's fantastic!) Brothers and Sisters I think this afternoon. It makes me laugh...I'm from a fairly large family so I seem to relate a lot to what goes on. I have 2 sisters, one older and one younger. I am the middle who yes...suffered from middle sister syndrome! I also have an older brother, the oldest of all of use. We are all married...Younger sis, Suzanne 22, lives in Scotland, married to John and have one child, Zac 3. Delicia, 30, lives next door to me with Stu and have no children. My brother who lives in Birmingham, Will 34, married to Debbie and have 4 little rat bags.
My Mum,54, who also lives next door with my sister and bro in law, is my best mate. We never use to get on but that's a whole other story. I lost my Dad to cancer in 2004. Again, i will talk about that another time when my joints are not so sore!
Well..that's introduced my family/support system. I will talk about them a lot and will try to give you more details about them as I go along.
Just to confirm that I have no plan for this blog so if you have any questions, please feel free! Any any suggestions would also be gratefully received.
Also, can anyone help on how to use this blog site? I don't know how to search for other bloggers that have the same interests as me. HELP??
Well another day of not doing very much. May has yet again had to go to Grandma's to be looked after. I really hate having to rely on others to do what I should be able to do. I am mummy and I want to be able to do things for myself and May. It makes me feel like a bad mum, and that I'm losing the bond between me and her. Life is so unfair!
So what do us 'invisible' do all day? On a bad day I sit and do nothing, and on a good day I 'over do it' and fit in as much as I can. Why do we do that to ourselves? I often wonder to myself if my illness is 'in my head' and that I'm just a paranoid freak but then on days like today when I'm in agony, i know it's there. I watched Jeremy Kyle this morning (rare because i really hate the programme!) but anyway, he was talking to people who have deformities and how people treat them. It was shocking to hear what some people have to go through. How people stare and make comments. It occurred to me that unless you are 'normal', people don't accept you either way. I've been in situations when wearing my hand braces that people look at you daft, and I feel that people to stare and make comments behind your back. It's a horrible feeling! Bringing on another point.....
We shouldn't have to spend our time trying to convince other people we are ill. I think we live in a society when no one trusts anyone anymore. An example of this is the benefits system, it's so darn hard. The forms for anything are so difficult and generic that it's impossible to fill it out. I've just received confirmation of my DLA. I now receive middle rate care and high rate mobility. I was awarded it original in 2006. In November 2008, it was due for renewal. Simple thinking me thought that this would be an easy process.....oh how wrong I was. I completed the form with the help of my husband, sent it off...to be told that I would not be award anything because I no longer qualify! I asked them how that can be if my condition hasn't changed? (confirmed also by my GP!) They couldn't give me an answer. Fortunately, I have a very understanding doctor who wrote them a fantastic letter on my behalf. This worked and eventually was awarded dla till 2011. What a flippin hastle? I understand that they have to be careful and that people in general do take the mick out of the system, but they seem to tar everyone with the same brush. Is it just me who things the system doesn't work?
Okay rant over! Seriously though...where did it all go wrong?
My plans for the rest of the day.....to sit and watch what I've taped in Sky plus (If you haven't got it yet...get it! It's fantastic!) Brothers and Sisters I think this afternoon. It makes me laugh...I'm from a fairly large family so I seem to relate a lot to what goes on. I have 2 sisters, one older and one younger. I am the middle who yes...suffered from middle sister syndrome! I also have an older brother, the oldest of all of use. We are all married...Younger sis, Suzanne 22, lives in Scotland, married to John and have one child, Zac 3. Delicia, 30, lives next door to me with Stu and have no children. My brother who lives in Birmingham, Will 34, married to Debbie and have 4 little rat bags.
My Mum,54, who also lives next door with my sister and bro in law, is my best mate. We never use to get on but that's a whole other story. I lost my Dad to cancer in 2004. Again, i will talk about that another time when my joints are not so sore!
Well..that's introduced my family/support system. I will talk about them a lot and will try to give you more details about them as I go along.
Just to confirm that I have no plan for this blog so if you have any questions, please feel free! Any any suggestions would also be gratefully received.
Also, can anyone help on how to use this blog site? I don't know how to search for other bloggers that have the same interests as me. HELP??
Monday, 23 February 2009
Well....just come back from the doctors! He's given me a cream to rub into my joints and a muscle relaxant. Can't remember the name but will add them when my hubby, Jim brings them home from the chemist.
Speaking of which, my Jim is fantastic, he puts up a lot with me. Although he has told me he's going to take me to the knackers yard! I don't think when we got married 7 years ago that we would end up like this. Poor thing, he doesn't even get his special 'promise' as I'm either too sore or just plain shattered. At least we can laugh about it.
Now I've updated you all on the doc's situation, I'm going to rest but will be back tomorrow!
Speaking of which, my Jim is fantastic, he puts up a lot with me. Although he has told me he's going to take me to the knackers yard! I don't think when we got married 7 years ago that we would end up like this. Poor thing, he doesn't even get his special 'promise' as I'm either too sore or just plain shattered. At least we can laugh about it.
Now I've updated you all on the doc's situation, I'm going to rest but will be back tomorrow!
Day One
My first blog....
Well I've been in bed all morning and bored stiff. My poor baby is being looked after by her grandparents. I just worry what she things mommy is still doing in bed.....she must think I'm mad. My baby, May is 9 months old. She beautiful and is the best baby in the world.
She sleeps all night and has two naps in the day. She's very clever and keeps me entertained.
My shoulders have been sore now for over a week, and now my whole arms are painful. They feel like they are hanging off and someone is trampling all over them. I find it hard to explain the pain to someone who doesn't understand. So, unless I'm talking to someone who doesn't understand, i don't talk about it. If someone asks me how I am, i just answer with the usual 'yeah...I'm fine!' On the other hand you don't want to whinge to people about how you feel because then you become the person no-one wants to talk to because all she does is moan.
So, sorry people...THIS IS MY LET OUT!
I call my Rheumy on Friday who has now advised me that i need another steroid injection. Another one that is going to make me gain weight. This is the same Rheumy that told me three months ago that if i lost weight I would feel better! How stupid....believe me if I could I would. I'm not a bad eater, I love cooking when I can lift a pan. Without exercising though, eating lettuce seems none void. I would rather be fat and able to pick up May than being in bed unable to get out.
Right....I have to go for now as I have to prepare for seeing the doctor.
Well I've been in bed all morning and bored stiff. My poor baby is being looked after by her grandparents. I just worry what she things mommy is still doing in bed.....she must think I'm mad. My baby, May is 9 months old. She beautiful and is the best baby in the world.
She sleeps all night and has two naps in the day. She's very clever and keeps me entertained.
My shoulders have been sore now for over a week, and now my whole arms are painful. They feel like they are hanging off and someone is trampling all over them. I find it hard to explain the pain to someone who doesn't understand. So, unless I'm talking to someone who doesn't understand, i don't talk about it. If someone asks me how I am, i just answer with the usual 'yeah...I'm fine!' On the other hand you don't want to whinge to people about how you feel because then you become the person no-one wants to talk to because all she does is moan.
So, sorry people...THIS IS MY LET OUT!
I call my Rheumy on Friday who has now advised me that i need another steroid injection. Another one that is going to make me gain weight. This is the same Rheumy that told me three months ago that if i lost weight I would feel better! How stupid....believe me if I could I would. I'm not a bad eater, I love cooking when I can lift a pan. Without exercising though, eating lettuce seems none void. I would rather be fat and able to pick up May than being in bed unable to get out.
Right....I have to go for now as I have to prepare for seeing the doctor.
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