This question goes to other fibro and RA bloggers, whose blogs I regularly read, whenever they stop blogging for a while.
I would wonder, are they well? What kept them away from blogging?
Felt better? Discovered more energy and therefore enjoying life?
Felt worse? And therefore desperate for energy, and sanity to blog?
I hope you all are well. I regularly read some of your blogs, and let me let you know that I think of you. Sarakastic mentioned that perhaps not many people read. Well, honestly, I don't expect many people read my blog. I only find time and energy to check others' perhaps once or twice a month? That is already "as much as I can". It all really depends on my energy level.
If you happen to be down.. rest a while my friend. But remember, get well soon and come back!
Yes, I am not feeling well. My RA have been flaring for a while, making me permanently tired. Now my fibro is in town too - keeping me in pain and awake.
Showing posts with label life. Show all posts
Showing posts with label life. Show all posts
Thursday, July 17, 2008
Thursday, April 03, 2008
The end of another work day
Yes, I made it to the end of another work day. And goodness, it is only Wednesday!
The week felt extremely long, since the RA is having a party right now.
The good news is my GP could finally refer me to rheumatologist, after my former rheumatologist wrote a long letter that I really had RA! Bless that good man. And bless my new GP who was willing to listen and did what was needed to get pass the red tape and get me a referal.
If I have the power, I would make it a sin not to allow patients with RA and FMS get properly followed up by specialists!
The week felt extremely long, since the RA is having a party right now.
The good news is my GP could finally refer me to rheumatologist, after my former rheumatologist wrote a long letter that I really had RA! Bless that good man. And bless my new GP who was willing to listen and did what was needed to get pass the red tape and get me a referal.
If I have the power, I would make it a sin not to allow patients with RA and FMS get properly followed up by specialists!
Friday, February 29, 2008
At the supermarket- can you pack your bags?
If yes, you lucky fella.
Two nights ago, I was a the checkout counter at the local supermart. I had a friend coming over, and wanted to buy some stuff, before picking him up from the station. My time was a bit tight.
I went to the shortest queue. 2 persons in front of me. I saw another customer left the queue, and I was the next customer.
The man had trouble packing his grocery. It took him a few attempts to get each item into his plastic bag. And after filling 1 bag, he struggled to open the next plastic bag. He had tremors, and poor coordination.
No wonder the guy in front of me left!!! It took him a long time to fill up the bags, and the cashier did not help at all! He would rather stare into space.
My first instinct was to help the man, but then I thought.. no, maybe not. This guy is really really young. Younger than me, perhaps. Twenties? Early thirties?
Whatever his problem, give him a chance to complete a simple task without help. Poor guy. I feel for him. I have been in his position. "Clogging up" people.
He is putting in a lot of effort, and conscious that customers behind him had been leaving the queue. He kept on looking at me from the corner of his eyes. Wondering if I was getting impatient? Wondering if I minded? Wondering why I did not help? I did not know. I am not sure if i did teh right thing? I actually took out my phone to try to look busy. What it the thing to do? I had no idea.
I only remember how happy I felt when i could bring back a few bags of groceries without help. Yes, it was a lot of effort, but I could do it on my own without help. I did it.
What would have made his day? getting help to pack groceries? Or buying, packing and carrying home the groceries to feed his family, all by himself?
Two nights ago, I was a the checkout counter at the local supermart. I had a friend coming over, and wanted to buy some stuff, before picking him up from the station. My time was a bit tight.
I went to the shortest queue. 2 persons in front of me. I saw another customer left the queue, and I was the next customer.
The man had trouble packing his grocery. It took him a few attempts to get each item into his plastic bag. And after filling 1 bag, he struggled to open the next plastic bag. He had tremors, and poor coordination.
No wonder the guy in front of me left!!! It took him a long time to fill up the bags, and the cashier did not help at all! He would rather stare into space.
My first instinct was to help the man, but then I thought.. no, maybe not. This guy is really really young. Younger than me, perhaps. Twenties? Early thirties?
Whatever his problem, give him a chance to complete a simple task without help. Poor guy. I feel for him. I have been in his position. "Clogging up" people.
He is putting in a lot of effort, and conscious that customers behind him had been leaving the queue. He kept on looking at me from the corner of his eyes. Wondering if I was getting impatient? Wondering if I minded? Wondering why I did not help? I did not know. I am not sure if i did teh right thing? I actually took out my phone to try to look busy. What it the thing to do? I had no idea.
I only remember how happy I felt when i could bring back a few bags of groceries without help. Yes, it was a lot of effort, but I could do it on my own without help. I did it.
What would have made his day? getting help to pack groceries? Or buying, packing and carrying home the groceries to feed his family, all by himself?
Sunday, February 10, 2008
What keeps you awake at night?
As I am preparing for another interview, and struggling with " to tell or not to tell", I also had to prepare for some answers to questions like "why do you want to do this"?
My two previous jobs were more in the commercial side, and people are often skeptical why you would give up jobs with more earning potential and "glamour" factor for less glamorous ones. And bear in mind, the person sitting across the table, who is fielding you the question, may have been trying to break into where you came from-unsuccessfully. In sort, there are skeptics out there who need to be convinced that you are sincere.
Why do I want to make this move? It is difficult to describe. It is a kind of feeling that I have to do something more "meaningful"? Something more meaningful, esp when it may benefit other people with various types of illnesses? If you know that I had been really ill, and I am still not feeling my best, you may "understand". If you are like me- been through hell , you will think what my career choice now is perfectly natural. But how would you know if I can't tell you about my colourful medical records?
How do I describe?
What keeps me awake.
Yes, I think I have to make a move, because I did not like what kept me awake. Apart from the aches, pains, and "ouch, I/he-hit-my-badly-inflamed-joint(s) moments", things at work could keep people awake.
While I was doing a job which directly impact the patients, my worries were where can I find the support ie money to do it. I would toss and turn, trying to find ways to make things work better etc.
While I was at the commercial sector, after proposing or doing something which I am sure benefit other patients, I had to ensure what I do would have some commercial benefits (anything without commercial interest should be aborted asap- no hope!). I would also be awake wondering whether my "great" idea is congruent to the objectives of the person(s) making the decision. You got to know their "personalities", their personal priorities aka agenda. Being kept awake by these things is totally worthless and useless.
I did not like what kept me awake at the commercial sector. I did not like lying awake wondering about meeting people's or a company's money making or a person's career boosting objectives. If I were to stay awake, I would prefer being stressed about how to benefit the patients. As an "old woman", I would not allow my beauty sleep being taken away by concerns about lining people's pocket.
Will a normal, healthy person understand my "what kept me awake" argument?
My two previous jobs were more in the commercial side, and people are often skeptical why you would give up jobs with more earning potential and "glamour" factor for less glamorous ones. And bear in mind, the person sitting across the table, who is fielding you the question, may have been trying to break into where you came from-unsuccessfully. In sort, there are skeptics out there who need to be convinced that you are sincere.
Why do I want to make this move? It is difficult to describe. It is a kind of feeling that I have to do something more "meaningful"? Something more meaningful, esp when it may benefit other people with various types of illnesses? If you know that I had been really ill, and I am still not feeling my best, you may "understand". If you are like me- been through hell , you will think what my career choice now is perfectly natural. But how would you know if I can't tell you about my colourful medical records?
How do I describe?
What keeps me awake.
Yes, I think I have to make a move, because I did not like what kept me awake. Apart from the aches, pains, and "ouch, I/he-hit-my-badly-inflamed-joint(s) moments", things at work could keep people awake.
While I was doing a job which directly impact the patients, my worries were where can I find the support ie money to do it. I would toss and turn, trying to find ways to make things work better etc.
While I was at the commercial sector, after proposing or doing something which I am sure benefit other patients, I had to ensure what I do would have some commercial benefits (anything without commercial interest should be aborted asap- no hope!). I would also be awake wondering whether my "great" idea is congruent to the objectives of the person(s) making the decision. You got to know their "personalities", their personal priorities aka agenda. Being kept awake by these things is totally worthless and useless.
I did not like what kept me awake at the commercial sector. I did not like lying awake wondering about meeting people's or a company's money making or a person's career boosting objectives. If I were to stay awake, I would prefer being stressed about how to benefit the patients. As an "old woman", I would not allow my beauty sleep being taken away by concerns about lining people's pocket.
Will a normal, healthy person understand my "what kept me awake" argument?
Monday, January 28, 2008
Not telling the whole truth
I chickened out from telling the whole truth. I did not tell them I have RA and fibro.
I have a bad feeling I performed badly. It is so difficult to not tell the truth. IT holds me back in many ways.
I have a bad feeling I performed badly. It is so difficult to not tell the truth. IT holds me back in many ways.
Friday, January 25, 2008
Tell me, what is "reasonable"?
My faith in "law" is diminishing. Where is the justice?
When two parties are involved, the law always seems to protect the more "powerful" party.
Examples?
Employment laws: To what extent are employees protected? To what extent are disabled employees, young mothers etc are protected? Although there are "acts" in place, they are pretty useless, as there are so many loop holes. "Reasonable adjustments" for disabled employees. How do you define "reasonable"? It is all up to the employer to define, with so many excuses about hurting the company efficiencies etc.
Housing and tenancy:
I have just called on behalf of my friends to find out about their rights. They have just moved into a new rented flat and found out that there are no water supplies. No water supply= no boiler= no heating. No water supply= no sanitation.
Is this flat fit for occupation?
They called the housing agent who managed their flat immediately, only to be told that the "person in charge" is not around. Call again, and they seemed to drag their feet again. So, where are they going to stay today? It is really cold today, and my friend has health problems- mild lupus and bad peripheral circulation. I have seen her fingers and toes turn blue when she did not keep warm enough in winter. I have seen them bruised, and painful because of exposure to cold.
I called and ask some questions, and was really fuming about the laws of this country.
What does the law say about provision of water and electricity? In this case, the tenants have just move in.
The landlord need to do the "repair" within "reasonable" time.
How long is reasonable?
It can be days, weeks. It is very difficult to define.
So, what will happen to my friends? Tonight will be particularly cold, and I cannot imagine them living there. They are miles away from me, and they might need to pop into a B&B/motel if it gets really cold tonight.
Could they get some sort of compensation for all these problems? For example, not pay the rental for yesterday and today (the days where they flat is clearly not ready/fit for occupation??) or some sort of compensation for needing to seek alternative accommodation?
No, they law does not have any provision for compensation to tenants who are given an accommodation unfit for living. However, the law says that the tenant must pay full rental, and ensure no arrears even when repairs are not carried out, otherwise, they are considered defaulting. They can ask the landlord to reduce rental for the period the problems exist, but the landlord have no obligations to fulfill it.
Don't the landlord & management agent have an obligation to ensure that they flat have basic supplies such as water and electricity connected before renting out?
They may claim that they were "not aware" of the situation. It is very difficult to "contest". For example, the water supply might have been cut off because the previous tenant did not pay up, or there is a broken pipe. This will not be considered the landlord's fault.
So, what can the tenants do?
Negotiate with the management agent to get it done asap. If they still drag their feet, involve the local council. The local council can act as a "mediator". If all these do not work, and the problem is prolonged, they can speak to the local environment office, who can then look into the matter and have the power to take actions -"ordering" a repair.
?????? Can you believe it??? Gosh, I think i should just get a property and rent it out, since my only obligation seems to be carrying out repair within "reasonable" time whenever my tenants complain. I don't even have an obligation to check that the house is in good condition, with basic things like water and electricity provided!
In other words, my friends are on a lose lose situation. They will have to wait for then landlord to carry out the "repair" within "reasonable" time. Days later? A week later, since it is the "weekend now"?
I find that these are all totally ridiculous. If you have no water supply to your house, and you are freezing cold, I bet you will call they plumber immediately. I bet you will try to get someone to repair it within the next couple of hours. I bet you won't think nothing can be done since it is weekend.
When two parties are involved, the law always seems to protect the more "powerful" party.
Examples?
Employment laws: To what extent are employees protected? To what extent are disabled employees, young mothers etc are protected? Although there are "acts" in place, they are pretty useless, as there are so many loop holes. "Reasonable adjustments" for disabled employees. How do you define "reasonable"? It is all up to the employer to define, with so many excuses about hurting the company efficiencies etc.
Housing and tenancy:
I have just called on behalf of my friends to find out about their rights. They have just moved into a new rented flat and found out that there are no water supplies. No water supply= no boiler= no heating. No water supply= no sanitation.
Is this flat fit for occupation?
They called the housing agent who managed their flat immediately, only to be told that the "person in charge" is not around. Call again, and they seemed to drag their feet again. So, where are they going to stay today? It is really cold today, and my friend has health problems- mild lupus and bad peripheral circulation. I have seen her fingers and toes turn blue when she did not keep warm enough in winter. I have seen them bruised, and painful because of exposure to cold.
I called and ask some questions, and was really fuming about the laws of this country.
What does the law say about provision of water and electricity? In this case, the tenants have just move in.
The landlord need to do the "repair" within "reasonable" time.
How long is reasonable?
It can be days, weeks. It is very difficult to define.
So, what will happen to my friends? Tonight will be particularly cold, and I cannot imagine them living there. They are miles away from me, and they might need to pop into a B&B/motel if it gets really cold tonight.
Could they get some sort of compensation for all these problems? For example, not pay the rental for yesterday and today (the days where they flat is clearly not ready/fit for occupation??) or some sort of compensation for needing to seek alternative accommodation?
No, they law does not have any provision for compensation to tenants who are given an accommodation unfit for living. However, the law says that the tenant must pay full rental, and ensure no arrears even when repairs are not carried out, otherwise, they are considered defaulting. They can ask the landlord to reduce rental for the period the problems exist, but the landlord have no obligations to fulfill it.
Don't the landlord & management agent have an obligation to ensure that they flat have basic supplies such as water and electricity connected before renting out?
They may claim that they were "not aware" of the situation. It is very difficult to "contest". For example, the water supply might have been cut off because the previous tenant did not pay up, or there is a broken pipe. This will not be considered the landlord's fault.
So, what can the tenants do?
Negotiate with the management agent to get it done asap. If they still drag their feet, involve the local council. The local council can act as a "mediator". If all these do not work, and the problem is prolonged, they can speak to the local environment office, who can then look into the matter and have the power to take actions -"ordering" a repair.
?????? Can you believe it??? Gosh, I think i should just get a property and rent it out, since my only obligation seems to be carrying out repair within "reasonable" time whenever my tenants complain. I don't even have an obligation to check that the house is in good condition, with basic things like water and electricity provided!
In other words, my friends are on a lose lose situation. They will have to wait for then landlord to carry out the "repair" within "reasonable" time. Days later? A week later, since it is the "weekend now"?
I find that these are all totally ridiculous. If you have no water supply to your house, and you are freezing cold, I bet you will call they plumber immediately. I bet you will try to get someone to repair it within the next couple of hours. I bet you won't think nothing can be done since it is weekend.
Wednesday, January 23, 2008
Life's little achievements.. like baking a cake..
I find "little achievements" in baking. Still out of job, and waiting for responses from a few potentials, life is suddenly "quiet" again.
It is almost a decade ago since RA strike me. It is not the pain which is a pain, it is the fact that it takes a way my energy. And even on days I feel totally energetic, I am still at its' mercy. If I " overdo" things, I get a flare.Full stop. So, energy is a precious commodity which needs to be strictly rationed. And oh, have I forgotten about the fibromyalgia??
Having been active person and a "high achiever" all my life, I find the lack of energy and and all those problems a had really depressive. Gatherings and seasons like Christmas is not easy for me. These are the times I am forced to look at what my my close friends are up to. While I am always so happy to hear their achievements and so proud of my friends= gals who kick asses, sometimes it is quite difficult not to "notice" the GAP! These people are now directors, managers, specialist doctors, assistant professors, consultants etc etc and some juggle a successful careers with kids. They bought swanky houses, drive nice cars, fly around to do business etc.At those times my RA and fibro cause trouble, I can only sit and watch life goes by. Is it a wonder that chronic illness patients like us need to fight depression at all times? Ok.. got to stop here.. this is negative!
Anyway, now that I am a "veteran" in living with RA and fibro, I learn to create my own little achievements- yes, daily achievements! Hmmm.. like baking muffins. I am pleased to announce that I have now progressed to cakes! I should be thankful, as just over 1-2 years ago, I could only do muffins (since they only need to to "mix" dry and wet ingredients together). Now I am onto cakes, which need much more energy!
Today I baked a really yummy blueberry cake! Big deal, yeah? Yes, it is big deal. It is a big deal for someone like me. It is a big deal for people like us. It is a big deal, as it is a way for me cope with my illness, to ensure that I feel that I am still learning something new everyday, I am still "achieving" something daily. It is a big deal, as I did so many things to improve my health, to get myself from a state of "barely having the energy to make muffins" to not being worried at I might fall asleep from fatigue while the cake is baking. These are no tiny feats! Ask any CFS/Fibromyalgia patients! It is big deal, as without these little achievements, it is too easy to fall prey to Depression.
Here are the recipes for the blueberry cakes I made. I have a good day cake and a bad day cake. Go on, try it! (Try to do the good day recipe when your hands/wrist are fine) No worries about the washing. They are so good that either the dog will lick things clean or the significant half/kids will be willing to wash up.
It is almost a decade ago since RA strike me. It is not the pain which is a pain, it is the fact that it takes a way my energy. And even on days I feel totally energetic, I am still at its' mercy. If I " overdo" things, I get a flare.Full stop. So, energy is a precious commodity which needs to be strictly rationed. And oh, have I forgotten about the fibromyalgia??
Having been active person and a "high achiever" all my life, I find the lack of energy and and all those problems a had really depressive. Gatherings and seasons like Christmas is not easy for me. These are the times I am forced to look at what my my close friends are up to. While I am always so happy to hear their achievements and so proud of my friends= gals who kick asses, sometimes it is quite difficult not to "notice" the GAP! These people are now directors, managers, specialist doctors, assistant professors, consultants etc etc and some juggle a successful careers with kids. They bought swanky houses, drive nice cars, fly around to do business etc.At those times my RA and fibro cause trouble, I can only sit and watch life goes by. Is it a wonder that chronic illness patients like us need to fight depression at all times? Ok.. got to stop here.. this is negative!
Anyway, now that I am a "veteran" in living with RA and fibro, I learn to create my own little achievements- yes, daily achievements! Hmmm.. like baking muffins. I am pleased to announce that I have now progressed to cakes! I should be thankful, as just over 1-2 years ago, I could only do muffins (since they only need to to "mix" dry and wet ingredients together). Now I am onto cakes, which need much more energy!
Today I baked a really yummy blueberry cake! Big deal, yeah? Yes, it is big deal. It is a big deal for someone like me. It is a big deal for people like us. It is a big deal, as it is a way for me cope with my illness, to ensure that I feel that I am still learning something new everyday, I am still "achieving" something daily. It is a big deal, as I did so many things to improve my health, to get myself from a state of "barely having the energy to make muffins" to not being worried at I might fall asleep from fatigue while the cake is baking. These are no tiny feats! Ask any CFS/Fibromyalgia patients! It is big deal, as without these little achievements, it is too easy to fall prey to Depression.
Here are the recipes for the blueberry cakes I made. I have a good day cake and a bad day cake. Go on, try it! (Try to do the good day recipe when your hands/wrist are fine) No worries about the washing. They are so good that either the dog will lick things clean or the significant half/kids will be willing to wash up.
Monday, January 14, 2008
Working with Rheumatoid Arthritis...know your Rights
...and your limitations.
After taking a couple of weeks off, I am now ready to go into my job search again. I have spent these few weeks reflecting on what went wrong, and what could be done better. It is very very sad but true- my RA had formed a big component of my work related problems. It is not all negative though. At times, I feel that I can understand and deal with issues better because of what I learned from RA, fibros etc.
However, it is undeniable, that my RA and fibro was a big set back in many ways, and may continue to be, unless I could overcome them.
Although there were disability protection acts etc, these are really unclear. What does "reasonable adjustments" mean? That was really entirely up to the employers to decide. The are plenty loopholes the laws are worth another entry!
I find the Employment section of NRAS very helpful and informative.
The problems that I (and many other RA patients!) faced at work is not something which I could resolve entirely on my own, despite bring out the whole lot of coping skills I have and getting full support from my family.
Communicating clearly about your condition with your colleagues and boss helps a lot (but may backfire sometimes). Making concessions (like getting low pay), and putting in extra hours to ensure quality work helps too (although you may see this as some sort of discrimination/exploitation!!).
However, improving the perception and understanding of other people about RA needs more than these individual efforts! It is all too easy for people to attribute your limitations to your lack of personal discipline rather than RA. How often have you heard " I am tired TOO", when you say you are fatigued? There is also an element of unpredictability and invisibility about RA's up and downs, which other could interpret as "inconsistent", and "lack of evidence". Ie, they may suspect that you are really waking up late when you say you have bad stiffness and need to come in 1-2 hours later.
Improving the work situation of patients with RA it is something that more formal protection in terms of regulations is needed. As RA patients, we need to create the awareness of these issues not only for our own benefit, but for all RA patients.
I not only want a job. I want to be able to work optimally, so that I can do my best! I want the chance to do what I can do based on my skills, education and experience. All I need is some minor modifications to get there. Can these be done?
After taking a couple of weeks off, I am now ready to go into my job search again. I have spent these few weeks reflecting on what went wrong, and what could be done better. It is very very sad but true- my RA had formed a big component of my work related problems. It is not all negative though. At times, I feel that I can understand and deal with issues better because of what I learned from RA, fibros etc.
However, it is undeniable, that my RA and fibro was a big set back in many ways, and may continue to be, unless I could overcome them.
- My boss see me as "chained"- not able to find another job easily as I only wanted to work part-time because of my health.
- I am seen as "unreliable", because of my RA flares. Although I only had 2 major flares, which would stop me from working even if I wanted, that was enough.
- Work arrangements- some colleagues resent my "special treatment", and wanted the same "privileges" extended to them.
Although there were disability protection acts etc, these are really unclear. What does "reasonable adjustments" mean? That was really entirely up to the employers to decide. The are plenty loopholes the laws are worth another entry!
I find the Employment section of NRAS very helpful and informative.
The problems that I (and many other RA patients!) faced at work is not something which I could resolve entirely on my own, despite bring out the whole lot of coping skills I have and getting full support from my family.
Communicating clearly about your condition with your colleagues and boss helps a lot (but may backfire sometimes). Making concessions (like getting low pay), and putting in extra hours to ensure quality work helps too (although you may see this as some sort of discrimination/exploitation!!).
However, improving the perception and understanding of other people about RA needs more than these individual efforts! It is all too easy for people to attribute your limitations to your lack of personal discipline rather than RA. How often have you heard " I am tired TOO", when you say you are fatigued? There is also an element of unpredictability and invisibility about RA's up and downs, which other could interpret as "inconsistent", and "lack of evidence". Ie, they may suspect that you are really waking up late when you say you have bad stiffness and need to come in 1-2 hours later.
Improving the work situation of patients with RA it is something that more formal protection in terms of regulations is needed. As RA patients, we need to create the awareness of these issues not only for our own benefit, but for all RA patients.
I not only want a job. I want to be able to work optimally, so that I can do my best! I want the chance to do what I can do based on my skills, education and experience. All I need is some minor modifications to get there. Can these be done?
Wednesday, January 02, 2008
New Year resolution
Everyone asked me if I have
Nope!
Was it surprising? I gave up doing
Nope!
Was it surprising? I gave up doing
Tuesday, January 01, 2008
New Year, new me.
This year, I have not failed to wish people to have a happy and HEALTHY new year.
I have been telling myself not to wonder what 2008 will bring to me, but what I can do to make 2008 the best it can be for me. 2007 had been a mixed year. In 2007, I had met with such unbelievable kindness, and also saw the worse in human kind.
2007 ended in significant way for me, especially career wise.
I made a lot of progress career wise. After a one year break from work to recuperate, I went back to work part-time, and subsequently did well enough to be taken in as a permanent staff. My work hours increased. I received external recognition for my work.
I lost my job After making all the arrangements to work efficiently and helping to take the company to where it is within a year- this is the treatment I received.
Suddenly, I lost trust in human kind. I lost confidence in myself. While I could predict and cope 95% of the time, a flare at the wrong time was an excuse to kill me. While no one bat an eye lid for people who take a few days "sick leave" for flu. But resting 3 days (on "annual leave"!) because of my RA was "proof" of my incapability.
I remember vividly driving home crying. Crying out of frustration? Injustice? Shock? I did not know why. Perhaps the shock needed to released somewhere. I remember opening this blog when I reached home. I have not written anything for months-I had been so busy. I had again, took on extra work because the B****had a health problem and needed rest and that perhaps contributed to my flare.
Reading this blog was the moment I reached home was therapeutic. And I was somehow relieved that I have stopped working. There were just too man
Finding a job will be daunting. The B**** threatened bad references. Will I walk out of this mess?? I don’t know how long it will take, but I will have to. I have gone through worse times when I saw no light which signifies the end of the tunnel when my health was in the pits.
Sunday, September 16, 2007
Numb
numb, numb.
That is how I feel?
No pain, no tears, no sleep, no smiles...
No wish, no hope.
Only silence, some resigned sighs..
Resigned to a thing called fate, or destiny?
Is this good enough?
Is it unacceptable?
Do I deserve something better?
Am I not worthy at all?
Do I live with it?
Can I walk out of it?
Am I hoping for too much?
Do I deserve something less...now?
Because the body is broken, so must the soul?
I have a "lesser " body,
SO must I have less of everything too?
Love, respect, dignity?
Numb...
That is how I feel?
No pain, no tears, no sleep, no smiles...
No wish, no hope.
Only silence, some resigned sighs..
Resigned to a thing called fate, or destiny?
Is this good enough?
Is it unacceptable?
Do I deserve something better?
Am I not worthy at all?
Do I live with it?
Can I walk out of it?
Am I hoping for too much?
Do I deserve something less...now?
Because the body is broken, so must the soul?
I have a "lesser " body,
SO must I have less of everything too?
Love, respect, dignity?
Numb...
Wednesday, May 09, 2007
Spring time energy crisis.
Life seems to be getting back to near "normality"-i.e. I could juggle a few things at a time. I have been very busy at work, revising for an exam and enjoying the spring time activities!
However, I go get tired very easily. I sleep in the car journeys when we go out. I slept & snored(!!!) at the end of my yoga classes, and tries hard to keep awake beyond 11pm. Last week, I had to go for a deep tissue massage to ease the points which have been slowly developing as my body is finding it taxing to handle so much. The RA flared, and the tender points developed so quickly that it became really a pain!
I have taken a few days of study leave, but have been sleeping a lot.
All these reminds me to slow down. Life is getting back quite normal, but my energy level is still playing catch up.
However, I go get tired very easily. I sleep in the car journeys when we go out. I slept & snored(!!!) at the end of my yoga classes, and tries hard to keep awake beyond 11pm. Last week, I had to go for a deep tissue massage to ease the points which have been slowly developing as my body is finding it taxing to handle so much. The RA flared, and the tender points developed so quickly that it became really a pain!
I have taken a few days of study leave, but have been sleeping a lot.
All these reminds me to slow down. Life is getting back quite normal, but my energy level is still playing catch up.
Monday, March 26, 2007
trying to forget
Sometimes, I try to forget that I have RA, I have fibro. Sometimes, for a couple of days in a stretch, or even a week or two, I can "forget" about these things-when I am extremely busy, and barely have extra energy to think about my health, to get bothered about the stiff hands in the morning, the achy ankle, the wobbly knees. I try to live with these discomfort, without really wanting to "notice" them. And sometimes I succeed, in trying to forget.
Almost two weeks whizzed by without me noticing. I sometimes surprise myself about how short my memory is getting, esp when it is about my RA. Perhaps it is a coping mechanism? I block off memories of days in bed?
No, it has not been all quiet in the past two weeks. I had swapped a day at work, because my bones were achy all over, I was too weak to "get up and go" in the morning. My bones have been actively fore-casting the weather. A day or two before they announced the cold snap was coming, I was already in bed, aching and cursing. When the cold snap came, I always felt hot and found the heating required by my hubby to me too much! Will they employ me as the weather woman?
And just now, I almost drowned. OK, that is an exaggeration. I had many mouthfuls of water and someone got to give me a hand until I find my footing. It was really scary. Really, really scary.
In movies, you always see people shout when they drown or struggle in the water. In reality, I don't think people always do. I was gasping for air, trying to "jump" up by pushing my feet against the floor the moment I sink. I was fighting for air. That is they only thinh I had on my mind. AIR.
The reason for this misadventure? One tiny little finger. One small joint-5th proximal metacarpal. That was the only painful joint when I swam, and yet, was only when I was in the water that did I realised that he other hand which was alright was also weak. My legs were useless. I could not exert much strength.
How do I try to forget? Not sure. I think I don't have to try. I will forget soon. This is not the first time I almost drowned.
Almost two weeks whizzed by without me noticing. I sometimes surprise myself about how short my memory is getting, esp when it is about my RA. Perhaps it is a coping mechanism? I block off memories of days in bed?
No, it has not been all quiet in the past two weeks. I had swapped a day at work, because my bones were achy all over, I was too weak to "get up and go" in the morning. My bones have been actively fore-casting the weather. A day or two before they announced the cold snap was coming, I was already in bed, aching and cursing. When the cold snap came, I always felt hot and found the heating required by my hubby to me too much! Will they employ me as the weather woman?
And just now, I almost drowned. OK, that is an exaggeration. I had many mouthfuls of water and someone got to give me a hand until I find my footing. It was really scary. Really, really scary.
In movies, you always see people shout when they drown or struggle in the water. In reality, I don't think people always do. I was gasping for air, trying to "jump" up by pushing my feet against the floor the moment I sink. I was fighting for air. That is they only thinh I had on my mind. AIR.
The reason for this misadventure? One tiny little finger. One small joint-5th proximal metacarpal. That was the only painful joint when I swam, and yet, was only when I was in the water that did I realised that he other hand which was alright was also weak. My legs were useless. I could not exert much strength.
How do I try to forget? Not sure. I think I don't have to try. I will forget soon. This is not the first time I almost drowned.
Thursday, March 01, 2007
Blogging to blot off stress
Laura(CFS Squared) had describe an email from e-how as a "divine intervention" her post about stress and CFS.
"Divine intervention"-I can fully understand her choice of words. My take about being a patient who face fatigue as an enemy is you get less energy than other "normal beings", but tiredness seems to be generating more stress for you!
Fatigue--> Events which generate stress---> More fatigue, less energy to deal with stress--> More events which generate stress---->....
It is a vicious cycle.
I think blogging help to blot off some stress,
As I commented in Laura's site, by blogging:
1) you have to crystallize your thoughts/emotions of the day, and try to put in down in words. A nice, calming self-reflection activity to calm frayed nerves.
2) You can read your old posts, and note down what stressed you, and what had helped. Often, kind souls will also pass by your blog to give you encouragements.
In addition,3) When everyone is tired of listening about how tired you are, your blog does not complain at all.
5) Sometimes, I also find myself rereading my post again and again (thanks to the fog-loads of errors!), to correct my spelling and grammatical mistake, and sometimes trying to "shape up" the plot. Of course, it was a night mare when my fogs first started and I had to read the horrible mistakes. Now, this process is almost therapeutic sometimes. Strange, isnt it? Probably it is all part of the coping process.
That is all I can manage today. I am totally tired.
I have a totally bad day.
At work, I have been picked on because I happened to do something better than a healthy young man, and this guy just could not accept, and gave me hell. He is one of those super ambitious type. I suppose "losing" to a sick woman who works part time is too much to his ego.
Sigh. Damn it if you do well, damn it if you don't when you a chronically ill. When I look at the situation, I am not sure I would like to "sympathize" the poor guy or myself. Who had it worse? A bright young man who saw everything as a competition and found himself "losing" to a sickie, or a sickie who gets the crap on after putting in every nanowatt of energy in her work.
I just have to remind myself that I have done well, and "normal" sensible people will be happy for me to do well. Or is it?
Wednesday, February 21, 2007
sick leave
Sick leaves make you unpopular.
Do we have to prove that? Despite the fact that I replace my all my "sick leave"-made possible by the fact that I only work part-time, I can sense the unhappiness in my boss's reaction. Sigh.. but what do you do when you come down with a flu or a strep throat like everyone else?
The other guys may just brave it all and stay in the office-productive or not, but for me... these are enough to make me lie on my bed, with my RA and fibro joining the party.
That is a depressing development. A few months into a new job, and I thought I am doing pretty well, and now I can see the fact that I take sick leave nearly every month (even though I replace them), people still find a way to talk. I am compared to the person with a visibly broken finger- with plaster and stuff to fix it, but what I have is invisible. The sheer fatigue and widespread aches brought on my something as common as a viral infection. The IBS joining the party etc etc. Here I am, being talked about. Sigh. Despite effectively having 0 sick leave because I always replaced them, that was still not good enough.
I just wish that I get better soon.
Do we have to prove that? Despite the fact that I replace my all my "sick leave"-made possible by the fact that I only work part-time, I can sense the unhappiness in my boss's reaction. Sigh.. but what do you do when you come down with a flu or a strep throat like everyone else?
The other guys may just brave it all and stay in the office-productive or not, but for me... these are enough to make me lie on my bed, with my RA and fibro joining the party.
That is a depressing development. A few months into a new job, and I thought I am doing pretty well, and now I can see the fact that I take sick leave nearly every month (even though I replace them), people still find a way to talk. I am compared to the person with a visibly broken finger- with plaster and stuff to fix it, but what I have is invisible. The sheer fatigue and widespread aches brought on my something as common as a viral infection. The IBS joining the party etc etc. Here I am, being talked about. Sigh. Despite effectively having 0 sick leave because I always replaced them, that was still not good enough.
I just wish that I get better soon.
Tuesday, February 13, 2007
The treatable and the untreatable
Any long time illness could cause significant distress ...
difference?
Treatable vs untreatable
visible vs invisible
controllable vs relapsing and remitting
difference?
Treatable vs untreatable
visible vs invisible
controllable vs relapsing and remitting
Sunday, January 28, 2007
Catching up with life-movies
I have been feeling tired yesterday and today. No, it is a tired is a good way, if you know what I mean.
I have been watching videos for a few hours at a stretch!
You see, life was at a stand still when i was struggling with my thesis and fibro/RA in the past 2 years. I did not have the energy to even do my work and carry on with the basic things in life-like cooking, getting some groceries etc. Reading and watching films are energy sapping activities, no matter how much you love or enjoy it. You cant do it without knowing that after 2 hours on it, you will have no more energy to do other things. 2 hours of play, followed by many more hours of recharge.
I was like a battery which spent more time recharging than being available for play.
Books were not so bad, because you could read for an 10 minutes or an hour-sleep for 1/2 hour if you are tired and then continue. Movies dont work that way. If you go into a cinema and feel sleepy after 30 minutes, you wasted a trip and come out feeling like you have fallen into a ditch. Even with DVDs or VCDs, having to pause 1/2 way to sleep means you can only watch it alone, and even if you do, you will not enjoy it.
That is how I accumulated so many things on my "wish list"-things to read and to watch.
Today, I am tired again, after that many hours of watching videos. :D
I have been watching videos for a few hours at a stretch!
You see, life was at a stand still when i was struggling with my thesis and fibro/RA in the past 2 years. I did not have the energy to even do my work and carry on with the basic things in life-like cooking, getting some groceries etc. Reading and watching films are energy sapping activities, no matter how much you love or enjoy it. You cant do it without knowing that after 2 hours on it, you will have no more energy to do other things. 2 hours of play, followed by many more hours of recharge.
I was like a battery which spent more time recharging than being available for play.
Books were not so bad, because you could read for an 10 minutes or an hour-sleep for 1/2 hour if you are tired and then continue. Movies dont work that way. If you go into a cinema and feel sleepy after 30 minutes, you wasted a trip and come out feeling like you have fallen into a ditch. Even with DVDs or VCDs, having to pause 1/2 way to sleep means you can only watch it alone, and even if you do, you will not enjoy it.
That is how I accumulated so many things on my "wish list"-things to read and to watch.
Today, I am tired again, after that many hours of watching videos. :D
Monday, January 15, 2007
SIMPLE CURRY RECIPE!!! The cheat's way
This may look long, but it is actually very easy, and fast when you got the hang of it. It is a balanced meal, and a great winter warmer. Just cook one "pot" and it could last you days!
Ingredients:
-If you try to get more turmeric into your system, add 1-2 tsp of the powder, and blend into the paste.
1) heat some oil in the pot. Add in the paste when oil is hot. Use lowest heat.
2) fry until fragrant -2-3 minutes
3) Add chicken-"stir fry"1-2 minites
4) Add onion and potatoes- stir to prevent pot burning, until onion slightly softened. Add some coconut cream and water to prevent burning
5) add water until enough to cover all the ingredients
6) Cook with low heat for about 20 minutes, then add "soft" vegetables. Cook for another 10-15 minutes, until tomatoes are soft, and "blended" into curry.
Add some fish sauce to taste.
Tip: If you find it too hot, add 1-2 tablespoon of sugar.
Serve with rice or pasta or bread. Baguette is fantastic with this!
To prevent the curry turning stale, boil it again before you sleep, and boil it again in the morning. Basically, the curry could keep for up to 3 days if you do this in winter. You can add fresh vege, [try those suggested "soft vege" as they are quick to cook] and meat or even frozen fish fillet everyday into the broth!!!
It is great to go with bread in the morning. I eat it again for lunch and dinner. Usually for the last round , I will add some oriental noodles, and have curry noodles. Great winter warmer!!
Try it out! And let me know when you improvise this!
If you find this cheat's curry still too difficult, try this sardine curry recipe. It takes less than 5 minutes!
Ingredients:- 1-2 tbsp vege oil
- 50-100gm of yellow Thai curry paste-try to get from Asian grocery stalls (much cheaper!) or sites like this. I use about 3 heaped tablespoons of the paste for 1 pot of curry, about 800 gm of chicken. Put more if you could take the "hot taste". A tub like this will allow you to cook at least 5-6 times
- 800gm of chicken (put only about 1/2 (500gm) if you don't like them too soft)
- 4 medium sized onions-cut into 8
- 1/2 cup of coconut cream, or 1 cup of semi-skimmed milk or 1/2 cup skimmed milk with 2 tablespoon of natural yogurt
- 4 potatoes (add more if you like, but increase the curry paste slightly if you do)-cubed
- 4-5 tomatoes
- Other "soft" vege: eg, okra, aubergine
- (optional)-fish sauce, turmeric powder
-If you try to get more turmeric into your system, add 1-2 tsp of the powder, and blend into the paste.
1) heat some oil in the pot. Add in the paste when oil is hot. Use lowest heat.
2) fry until fragrant -2-3 minutes
3) Add chicken-"stir fry"1-2 minites
4) Add onion and potatoes- stir to prevent pot burning, until onion slightly softened. Add some coconut cream and water to prevent burning
5) add water until enough to cover all the ingredients
6) Cook with low heat for about 20 minutes, then add "soft" vegetables. Cook for another 10-15 minutes, until tomatoes are soft, and "blended" into curry.
Add some fish sauce to taste.
Tip: If you find it too hot, add 1-2 tablespoon of sugar.
Serve with rice or pasta or bread. Baguette is fantastic with this!
To prevent the curry turning stale, boil it again before you sleep, and boil it again in the morning. Basically, the curry could keep for up to 3 days if you do this in winter. You can add fresh vege, [try those suggested "soft vege" as they are quick to cook] and meat or even frozen fish fillet everyday into the broth!!!
It is great to go with bread in the morning. I eat it again for lunch and dinner. Usually for the last round , I will add some oriental noodles, and have curry noodles. Great winter warmer!!
Try it out! And let me know when you improvise this!
If you find this cheat's curry still too difficult, try this sardine curry recipe. It takes less than 5 minutes!
Weekends are good .........Curry is great!
Weekends are something to look forward to when you are stressed at work. To get an idea of how stressed I am, let me tell you that I cant wait for the end of the week, which is just 3 days away for a part-timer like me. I dread going to work. Dread having to get out when it is so cold, and my ankles so painful, and dread it when I arrive at the office, and have to steel myself to appear alert for the next 8 hours. Scary. Scary enough just coping with energy. Even more scary now that if I arrive late, I know there is a back stabber ready for the kill. I feel like telling this young "kid" to just leave me alone!!! Back stabbing is bad for karma, and stop questioning the "realness" of my pains, just because you never knew pain!!
Out with the accumulated pent up stress (it is just the 1st work day!!!), in with the goodies I cooked. NOthing much actually. Just curry.
The supermarket had a sale of thighs and drumsticks-1/2 price, and I immediately thought- CURRY!!!! The hard part of curry is peeling the potatoes, and cutting them when your hands are inflammed. Cutting up the chicken is a pain too, especially if you are trying to get rid of the skin a fat! Buy chicken breast if you could afford. Saves you the trouble!!
Anyway, the potato peeling was delegated to my hubby. Asked him to peel enough for 2 meals, and got him to cut it to pieces 2cm3 cubes too. 2x2x2cm.
I skined the chicken, and then cut them to large chunks. Basically, I just cut off the meat from the sides of the thigh bones. You could put the thigh bone into the curry with the meat, or save it for leek soup!
This weekend, I cooked my simple chicken and vege curry, the Cheat's way!
Out with the accumulated pent up stress (it is just the 1st work day!!!), in with the goodies I cooked. NOthing much actually. Just curry.
The supermarket had a sale of thighs and drumsticks-1/2 price, and I immediately thought- CURRY!!!! The hard part of curry is peeling the potatoes, and cutting them when your hands are inflammed. Cutting up the chicken is a pain too, especially if you are trying to get rid of the skin a fat! Buy chicken breast if you could afford. Saves you the trouble!!
Anyway, the potato peeling was delegated to my hubby. Asked him to peel enough for 2 meals, and got him to cut it to pieces 2cm3 cubes too. 2x2x2cm.
I skined the chicken, and then cut them to large chunks. Basically, I just cut off the meat from the sides of the thigh bones. You could put the thigh bone into the curry with the meat, or save it for leek soup!
This weekend, I cooked my simple chicken and vege curry, the Cheat's way!
Sunday, January 07, 2007
pressure is on
The pressure is on, and escalating- Both at home and at work.
Since before Christmas, I had bits of swellings from my RA here and there. I canceled meeting friends on the 23rd to rest at home. Cut down my my social stuff, and delayed putting in the form for my volunteer work. I am watching, resting, and hope that it will go away soon.
The mornings have been bad.
BAD. Do you know what it means in a winter morning if your joints swell? Your first steps on the day would be a bite-your-lips and grimace experience. In fact, I usually wake up at least 45minutes earlier, turn up the heating (which thankfully, is right beside my bed), and slowly "roast", gently moving myself, changing positions, stretching gently, until I feel my joints are ready to do their work-supporting me when I stand up, and also allowing me to turn on the tap and wash my face, brush my teeth. I depend on my husband to make me a cup of coffee, as my hands are unreliable in the mornings.
Despite waking earlier, I still arrive at work late. Sometimes I leave late because I could not really "move" yet. Sometimes because it is too cold, that I hoped an extra 10 minutes of sun would have made the walk more bearable. And always, it means I walk more slowly than usual, turning a 30 minute walk into 45 minutes. Sometimes, I am just too tired to get up, honestly. Too tired, despite all the sleep. And more tired, at the though of walking in the cold.
So, for more than 2 weeks I have been turning up to work late, and avoiding housework.
On the first work day this year, I called to report I had a bad thumb-right thumb. My tenosynovitis; a nerve must have been hit, again. My best treatment is ---REST, gently massaging it and slapping on lots of NSAID gels. Experience allows me to hazard a guess, whether I should risk it-continue working as per normal, or rest it till until the swelling and weakness goes down. I decided to rest it.
That is a decision which is getting me into trouble with my boss, thanks to a co-worker.
In life, you meet nice understanding people, and then you meet those people who say things like...
There is one such person at work-the boss' favourite chap. Ouch. Yeah, ouch. I know that he has been back-stabbing me for coming in late. Two off days in 2 weeks. I am replacing these "off days" on the days which i am not supposed to come in, that means I am not taking sick leave at all!!! However, a meeting was postponed because of me, and someone happily took the chance about inconvenience and loss of productivity caused.
I need not go to describe what are the subsequent things that followed.... I know my job is at stake.
For someone unreliable like me, things like coming in late and taking sick leave is easily used by colleagues as a weapon in office politics. I am just having a part time job now, and yet, I cant escape the politics! Blame it on my inability to drink with my boss, or join them for a steak. Join them, and it is "I thought you cant take this---therefore you are faking?" Dont join them, and you are immediately vulnerable to the attacks from those idiots.
Sigh.............
How can I blame others, when this morning my own hubby complained about me being lazy, and telling me it is my turn to do breakfast? He is sick of his own cooking, and asked when I could start cooking again. He is trained as a MCP by his mum, and I know too well the effect of a long telephone conversation with his mum had on him. It always results in him complaining he had helped me a lot with the housework, like he cooked the dinner for me (when he is eating it too!), he helped me washed the dishes, he did this for me, did that for me. He does not realise that, and I did not have the heart to say it to him. I know his mum is everything to him, and would not want to do anything to make life difficult for him.
I usually do most of the housework. Did he not realise that my hands have been swollen? I am tired? Well, he is tired of me being sick and tired. My hands almost have a permanent mild swelling in the past 2 weeks, and he is so used to seeing it-it no longer hurted him like before. I almost broke down and cried in the kitchen, when I struggled to fill the kettle. My own husband.
In case you ask me how could I type so much when my hands are in pain, let me tell you....this entry, took many hours, and lots of physical pain-in exchange for a chance to vent off. Yes, it is all in the brains-FMS or even my RA. It is all in my brains, because I need to struggle with these sort of things, anytime. And shut up if you tell me you dont feel like getting up in the morning too. Unless you have RA or fibromyalgia, you would never understand how tiring it could be. It is a long constant battle on many fronts. Tiring. Tiring for me, and tiring for my family too. In case you think it is easy for my hubby, it is not. I think he realised that he cant even show that he is tired, like what he did this morning. When he does that, that saps last bit of energy from me.
Since before Christmas, I had bits of swellings from my RA here and there. I canceled meeting friends on the 23rd to rest at home. Cut down my my social stuff, and delayed putting in the form for my volunteer work. I am watching, resting, and hope that it will go away soon.
The mornings have been bad.
BAD. Do you know what it means in a winter morning if your joints swell? Your first steps on the day would be a bite-your-lips and grimace experience. In fact, I usually wake up at least 45minutes earlier, turn up the heating (which thankfully, is right beside my bed), and slowly "roast", gently moving myself, changing positions, stretching gently, until I feel my joints are ready to do their work-supporting me when I stand up, and also allowing me to turn on the tap and wash my face, brush my teeth. I depend on my husband to make me a cup of coffee, as my hands are unreliable in the mornings.
Despite waking earlier, I still arrive at work late. Sometimes I leave late because I could not really "move" yet. Sometimes because it is too cold, that I hoped an extra 10 minutes of sun would have made the walk more bearable. And always, it means I walk more slowly than usual, turning a 30 minute walk into 45 minutes. Sometimes, I am just too tired to get up, honestly. Too tired, despite all the sleep. And more tired, at the though of walking in the cold.
So, for more than 2 weeks I have been turning up to work late, and avoiding housework.
On the first work day this year, I called to report I had a bad thumb-right thumb. My tenosynovitis; a nerve must have been hit, again. My best treatment is ---REST, gently massaging it and slapping on lots of NSAID gels. Experience allows me to hazard a guess, whether I should risk it-continue working as per normal, or rest it till until the swelling and weakness goes down. I decided to rest it.
That is a decision which is getting me into trouble with my boss, thanks to a co-worker.
In life, you meet nice understanding people, and then you meet those people who say things like...
"there is something called the 24 hour virus, usually caused by hangover, or going for a job interview...."
"people take take sick leave when they are not happy with their job, and because they can"
"....."
"........."
"people take take sick leave when they are not happy with their job, and because they can"
"....."
"........."
There is one such person at work-the boss' favourite chap. Ouch. Yeah, ouch. I know that he has been back-stabbing me for coming in late. Two off days in 2 weeks. I am replacing these "off days" on the days which i am not supposed to come in, that means I am not taking sick leave at all!!! However, a meeting was postponed because of me, and someone happily took the chance about inconvenience and loss of productivity caused.
I need not go to describe what are the subsequent things that followed.... I know my job is at stake.
For someone unreliable like me, things like coming in late and taking sick leave is easily used by colleagues as a weapon in office politics. I am just having a part time job now, and yet, I cant escape the politics! Blame it on my inability to drink with my boss, or join them for a steak. Join them, and it is "I thought you cant take this---therefore you are faking?" Dont join them, and you are immediately vulnerable to the attacks from those idiots.
Sigh.............
How can I blame others, when this morning my own hubby complained about me being lazy, and telling me it is my turn to do breakfast? He is sick of his own cooking, and asked when I could start cooking again. He is trained as a MCP by his mum, and I know too well the effect of a long telephone conversation with his mum had on him. It always results in him complaining he had helped me a lot with the housework, like he cooked the dinner for me (when he is eating it too!), he helped me washed the dishes, he did this for me, did that for me. He does not realise that, and I did not have the heart to say it to him. I know his mum is everything to him, and would not want to do anything to make life difficult for him.
I usually do most of the housework. Did he not realise that my hands have been swollen? I am tired? Well, he is tired of me being sick and tired. My hands almost have a permanent mild swelling in the past 2 weeks, and he is so used to seeing it-it no longer hurted him like before. I almost broke down and cried in the kitchen, when I struggled to fill the kettle. My own husband.
In case you ask me how could I type so much when my hands are in pain, let me tell you....this entry, took many hours, and lots of physical pain-in exchange for a chance to vent off. Yes, it is all in the brains-FMS or even my RA. It is all in my brains, because I need to struggle with these sort of things, anytime. And shut up if you tell me you dont feel like getting up in the morning too. Unless you have RA or fibromyalgia, you would never understand how tiring it could be. It is a long constant battle on many fronts. Tiring. Tiring for me, and tiring for my family too. In case you think it is easy for my hubby, it is not. I think he realised that he cant even show that he is tired, like what he did this morning. When he does that, that saps last bit of energy from me.
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