Saturday, 10 October 2009
Kleeneze Advert on TV!!!!
The number to call if you want to be a Distributor and get brilliant training from me!! is 0114 2995797.....or visit http://www.LetsDoItNow.co.uk to request information
Update from Hughie!!
Hello there all....
Well, I had a dreadful time in court, going over my ordeal of June 2007 with my previous employers, all for the judges to decide that they didn't have enough time to make a decision and would let us know within 28 days by post!!!! I was stunned that this could happen, but at least all the trauma is gone, I just need to be patient a little while longer, to get my justice. I got a few apologies throughout proceedings, which did mean a lot, so even if I don't get compensated, I have at least been heard and maybe they will consider how they treat people in their business going forward. It was interesting to hear that there are no other disabled people working for them any more!! They need to recruit!!
Well, I am astonishing myself with the energy that I seem to have at the moment, my medication is very well balanced and I am managing to really work hard on my Kleeneze business with some great results!! People do buy from catalogues, especially at this time of year. Many people are already buying for Christmas to spread the cost. Whatever is said about the credit crunch, people still want to spoil themselves with bits and pieces, many of the items we sell are every day, essential stuff, but people are "treating" themselves too, to the more luxurious items. I am working the business during school hours - I do some admin and follow up calls when the kids are home and some deliveries to customers when Chris gets home, but I am really getting into it and have already got 2 people in my team!!! I did have another chap, but he packed it in shortly after starting as he decided it was too much like hard work!! Some people have no energy!!! I dismissed Kleeneze for at least 6 months before I took on the challenge though, it isn't mentally demanding, many of the duties are repetitive, but time consuming...Me hobbling about on my crutch and with my little trolley of catalogues takes me 45 min's to deliver 50 catalogues, healthy people do 200 in an hour!! I just keep going at my pace though and I am getting some great customers who I love chatting to...
I hit a bit of a brick wall when I got caught out in the rain delivering yesterday though!! The cold and the wet seemed to get into my bones and I was shattered, shivering and achy all evening and most of today....I was back out in the sunshine by 2pm today delivering another 125 catalogues though!!
I am doing some advertising on line to get more people into my business and to show them the opportunity, the more people I have all doing a little bit, the bigger and better the business will be!!
I am reading a lot of positive attitude literature at the moment, stuff on MLM and direct sales, but also about life coaching and the power of positive attraction. I wasn't sure to start with, but the more your hear (I listen to CDs in the car too!) and read, the more it makes sense really. It is better than being bloody miserable anyway, however you look at it!!!! Michael Heppell is my favourite at the moment, he did a presentation at the Kleeneze Christmas Showcase in September - all about "Being Brilliant" you really need to change your whole way of thinking, talking and even posture to get there...I get updates from his website too which are very inspirational, if you have had a bad day...
Living with any chronic health problem is shitty, no matter how it affects you. It just isn't fair. It would only be fair if EVERYONE had it!! But I have done lots of soul searching and thinking about the better things in my life and on balance, I don't do so bad really. I am still here, I can get around, I am motivated to do things and I am in control of my medication which is controlling my condition, so I am in a good place...I urge anyone who isn't in control, to get that control as soon as you can. I immediately started to take control when I got my confirmed diagnosis and treatment plan. The feelings of limbo before made me feel very sorry for myself and without direction. I know now how to deal with my symptoms and I know my limitations and live within them. Don't get me wrong, I still have very bad days, but generally I know where I am going, how I am going and how much longer than everyone else it is going to take me, but that is fine, because I will get there in the end - probably knackered, sweaty and not looking my best, but I will be there and won't miss out on anything!!
Take care my lovelies and try to get control!!
Much love
Wend x x x x x x
Well, I had a dreadful time in court, going over my ordeal of June 2007 with my previous employers, all for the judges to decide that they didn't have enough time to make a decision and would let us know within 28 days by post!!!! I was stunned that this could happen, but at least all the trauma is gone, I just need to be patient a little while longer, to get my justice. I got a few apologies throughout proceedings, which did mean a lot, so even if I don't get compensated, I have at least been heard and maybe they will consider how they treat people in their business going forward. It was interesting to hear that there are no other disabled people working for them any more!! They need to recruit!!
Well, I am astonishing myself with the energy that I seem to have at the moment, my medication is very well balanced and I am managing to really work hard on my Kleeneze business with some great results!! People do buy from catalogues, especially at this time of year. Many people are already buying for Christmas to spread the cost. Whatever is said about the credit crunch, people still want to spoil themselves with bits and pieces, many of the items we sell are every day, essential stuff, but people are "treating" themselves too, to the more luxurious items. I am working the business during school hours - I do some admin and follow up calls when the kids are home and some deliveries to customers when Chris gets home, but I am really getting into it and have already got 2 people in my team!!! I did have another chap, but he packed it in shortly after starting as he decided it was too much like hard work!! Some people have no energy!!! I dismissed Kleeneze for at least 6 months before I took on the challenge though, it isn't mentally demanding, many of the duties are repetitive, but time consuming...Me hobbling about on my crutch and with my little trolley of catalogues takes me 45 min's to deliver 50 catalogues, healthy people do 200 in an hour!! I just keep going at my pace though and I am getting some great customers who I love chatting to...
I hit a bit of a brick wall when I got caught out in the rain delivering yesterday though!! The cold and the wet seemed to get into my bones and I was shattered, shivering and achy all evening and most of today....I was back out in the sunshine by 2pm today delivering another 125 catalogues though!!
I am doing some advertising on line to get more people into my business and to show them the opportunity, the more people I have all doing a little bit, the bigger and better the business will be!!
I am reading a lot of positive attitude literature at the moment, stuff on MLM and direct sales, but also about life coaching and the power of positive attraction. I wasn't sure to start with, but the more your hear (I listen to CDs in the car too!) and read, the more it makes sense really. It is better than being bloody miserable anyway, however you look at it!!!! Michael Heppell is my favourite at the moment, he did a presentation at the Kleeneze Christmas Showcase in September - all about "Being Brilliant" you really need to change your whole way of thinking, talking and even posture to get there...I get updates from his website too which are very inspirational, if you have had a bad day...
Living with any chronic health problem is shitty, no matter how it affects you. It just isn't fair. It would only be fair if EVERYONE had it!! But I have done lots of soul searching and thinking about the better things in my life and on balance, I don't do so bad really. I am still here, I can get around, I am motivated to do things and I am in control of my medication which is controlling my condition, so I am in a good place...I urge anyone who isn't in control, to get that control as soon as you can. I immediately started to take control when I got my confirmed diagnosis and treatment plan. The feelings of limbo before made me feel very sorry for myself and without direction. I know now how to deal with my symptoms and I know my limitations and live within them. Don't get me wrong, I still have very bad days, but generally I know where I am going, how I am going and how much longer than everyone else it is going to take me, but that is fine, because I will get there in the end - probably knackered, sweaty and not looking my best, but I will be there and won't miss out on anything!!
Take care my lovelies and try to get control!!
Much love
Wend x x x x x x
Sunday, 20 September 2009
Disability Discrimination
Hi there!
Well, I did promise that I would try to blog every Sunday, so here I am again....not feeling my best for the last few days - trepidation, resurrection of hurt feelings all coming back from my terrible time during the Summer last year when I was forced to resign due to disability discrimination and constructive dismissal....
I began getting ill during July 2007 - we now know, after much diagnostics, researching, numerous visits to various medics, gathering information from the Internet and finding the Hughes Syndrome Foundation, that I have Hughes Syndrome - well, undifferentiated Connective Tissue Disease - symptoms of Lupus, Sjorgrens and Hughes Syndromes, although bloods are negative, the symptoms are severe and debilitating on a daily basis. Medics suggest I don't work full time and have said that there is treatment but no cure for my condition.
My employers accommodated me working from home part of my working week, they also eventually agreed to me further reducing my hours from 30 down to 23 over 4 days, 50%of these working from home. As I needed to attend fewer medical appointments and I adjusted to my condition, medication and treatments, my performance at work improved in the 3 months immediately following my reduction in hours. I was able to take more rest breaks and found that my productivity improved as I paced myself better. The medics were still disagreeing about what my diagnosis was at the time, although one thing was for sure, I had and am always going to have degenerative disc disease as well as whatever else was causing my other symptoms. My symptoms were there, no matter what it was called, even if it was in my head (which it wasn't!!). The symptoms were there, no matter what it was that I had....The medics were saying that a treatment plan would take time to improve how I felt and that there were no promises that I would get better and be fit enough to work back at my usual hours and location. I wanted to be better enough to do this, I also wanted to be better enough to play football in the park, but reality was that it probably wasn't going to happen. Wanting something to happen and what can actually be achieved is something quite different....don't we all WANT to win the lottery?? what is the reality though??? Getting someone to get better to order is only going to make them worse?? I was treated like a burden, not as an asset to the business who had worked through thick and thin for 15 years, making the business hundreds of thousands of pounds over the years.
On a Friday 13th, I was cornered in a room and it was explained that it was not possible for me to work from home and do reduced hours any more (even though my performance was 2nd highest in a team of 8 people all working full time hours) then they would have to seriously consider my position within the company and may look at dismissal on the grounds of incapability!!! A grievance process followed and they did withdraw this, but wanted to constantly monitor me returning as soon as possible to 4 days in the office. Not wanting to be under this pressure to get better from a condition that is incurable, I resigned, under duress and was left heart broken and floundering in a world that I found completely callous to my circumstances. I did not choose to be ill or disabled or in pain, yet I was being held responsible for not being well enough to work. I was still being productive and making the company money, however politically it was not the "norm" and hence not something that they wanted to support me on...
I will never be employed again and be in the hands of another person's judgement of what I am capable or incapable of doing. They are even now saying that they didn't know I was disabled - my back injury (1st operation was 3 months prior to commencing this employment back in 1993) causes me sufficient problems to be in receipt of Disability Living Allowance, so surely under the Disability at Work Act (where you are disabled for being incontinent??!!) I AM disabled, have been since 1993 and still am, will always be. Never mind the horrendous pain, fatigue and depression that is caused by Hughes Syndrome on top of the back problems!!
So I am to be cross examined tomorrow until Wednesday on my version of events of 15 months ago, so that a Judge can award me compensation for the hurt and loss of earnings and career/lifestyle that I have suffered....I have to justify my position of how I feel and how ill I am, so that my ex-employers can be proved to be money grabbing and heartless in their approach to me.
I am not looking forward to the whole situation and proceedings, it has to be done though if justice is to be served... we shall see eh??
Much love to all.....
Wend x x x x
Well, I did promise that I would try to blog every Sunday, so here I am again....not feeling my best for the last few days - trepidation, resurrection of hurt feelings all coming back from my terrible time during the Summer last year when I was forced to resign due to disability discrimination and constructive dismissal....
I began getting ill during July 2007 - we now know, after much diagnostics, researching, numerous visits to various medics, gathering information from the Internet and finding the Hughes Syndrome Foundation, that I have Hughes Syndrome - well, undifferentiated Connective Tissue Disease - symptoms of Lupus, Sjorgrens and Hughes Syndromes, although bloods are negative, the symptoms are severe and debilitating on a daily basis. Medics suggest I don't work full time and have said that there is treatment but no cure for my condition.
My employers accommodated me working from home part of my working week, they also eventually agreed to me further reducing my hours from 30 down to 23 over 4 days, 50%of these working from home. As I needed to attend fewer medical appointments and I adjusted to my condition, medication and treatments, my performance at work improved in the 3 months immediately following my reduction in hours. I was able to take more rest breaks and found that my productivity improved as I paced myself better. The medics were still disagreeing about what my diagnosis was at the time, although one thing was for sure, I had and am always going to have degenerative disc disease as well as whatever else was causing my other symptoms. My symptoms were there, no matter what it was called, even if it was in my head (which it wasn't!!). The symptoms were there, no matter what it was that I had....The medics were saying that a treatment plan would take time to improve how I felt and that there were no promises that I would get better and be fit enough to work back at my usual hours and location. I wanted to be better enough to do this, I also wanted to be better enough to play football in the park, but reality was that it probably wasn't going to happen. Wanting something to happen and what can actually be achieved is something quite different....don't we all WANT to win the lottery?? what is the reality though??? Getting someone to get better to order is only going to make them worse?? I was treated like a burden, not as an asset to the business who had worked through thick and thin for 15 years, making the business hundreds of thousands of pounds over the years.
On a Friday 13th, I was cornered in a room and it was explained that it was not possible for me to work from home and do reduced hours any more (even though my performance was 2nd highest in a team of 8 people all working full time hours) then they would have to seriously consider my position within the company and may look at dismissal on the grounds of incapability!!! A grievance process followed and they did withdraw this, but wanted to constantly monitor me returning as soon as possible to 4 days in the office. Not wanting to be under this pressure to get better from a condition that is incurable, I resigned, under duress and was left heart broken and floundering in a world that I found completely callous to my circumstances. I did not choose to be ill or disabled or in pain, yet I was being held responsible for not being well enough to work. I was still being productive and making the company money, however politically it was not the "norm" and hence not something that they wanted to support me on...
I will never be employed again and be in the hands of another person's judgement of what I am capable or incapable of doing. They are even now saying that they didn't know I was disabled - my back injury (1st operation was 3 months prior to commencing this employment back in 1993) causes me sufficient problems to be in receipt of Disability Living Allowance, so surely under the Disability at Work Act (where you are disabled for being incontinent??!!) I AM disabled, have been since 1993 and still am, will always be. Never mind the horrendous pain, fatigue and depression that is caused by Hughes Syndrome on top of the back problems!!
So I am to be cross examined tomorrow until Wednesday on my version of events of 15 months ago, so that a Judge can award me compensation for the hurt and loss of earnings and career/lifestyle that I have suffered....I have to justify my position of how I feel and how ill I am, so that my ex-employers can be proved to be money grabbing and heartless in their approach to me.
I am not looking forward to the whole situation and proceedings, it has to be done though if justice is to be served... we shall see eh??
Much love to all.....
Wend x x x x
Sunday, 13 September 2009
Summer to Remember!
Hello all!!
Again my apologies for not posting for a while...busy summer getting my life back together, whatever the challenges!!
Job front - well, I tried to continue on in recruitment, got made redundant, the bottom has fallen out of recruitment consultancy, with over £3million unemployed again, who in their right mind is going to spend £2k to recruit someone, when all they have to do is place a free ad and wade through the response for nowt??!! I am sure that all will come back to them again in time, but quite a long time...not for me any more..16 years was my lot!
Telesales from home was fine, for a very short time, until I did the call lists too quickly and they ran out of customers for me to call!!! No good when childcare had already been booked and paid for in advance!! So?? what to do - I need to earn a good income, work from home as I am not well enough to do a normal 9-5 job, work around the kids as well, trying to avoid childcare after school costs - £14.60 a day!!!
I dismissed this opportunity back in May when I was first job seeking....Kleeneze - running and building my own business - retailing products via catalogue drops and also recruiting, training and mentoring a team to do the same as me...I use crutches to walk around - I get tired easily, I am in pain quite a lot....give it a go Wend and see how we can get around my "issues". Well, I learned that there are quite a few disabled people already in Kleeneze who are doing well...I read up on how they do things - trolleys to hold your catalogues, pacing yourself - delivering to 100 houses a day takes me 2 hours, it would take a healthy person about 45 minutes - but hey?? who's in a rush?? Introducing the opportunity to other people - I can do that!! I love to talk, all I have to do is pass on the opportunity DVD and tell them how I am doing, I don't have to sell any more!!! The catalogue items sell themselves, the opportunity sells itself, I just enjoy doing what I want, how I want (following a successful system) and when I want. I have no child care. I collect catalogues on a Monday that I have delivered the previous Friday and Saturday. Tuesday and Wednesday I deliver more catalogues, Thursday and Friday I collect them back up. I do some fliering and put shop cards in windows, I hand out business cards and have a website where I attract people into the business. I do as much as I want to do every day. I don't have childcare costs, I take my kids to school every day and collect them too (they love this!!). I have even offered to pick up another mum's son to reduce her childcare costs...I feel in charge of my own destiny at the moment. My Hughes symptoms are controlled, I have to take medication and I have to take lots of rest breaks and make sure that I eat sensibly. The extra exercise and fresh air that I am getting is doing me good! I may even lose some of the weight that I have gained in the last 2 years (fingers crossed).
When you have a condition like Hughes, you have to live with it, rather than against it...Hughes is not going away..I thought that I would get a cure after diagnosis - not the case, I got "management" after diagnosis, the best it is going to get..so after the disappointment of finding out that I am not going to get better...you have to do something that gives you back your power and challenges you on a daily basis...I feel mentally strong and I am confident that I can really make my life work now successfully. I aim to increase my earnings significantly and reasonably quickly, I am on my way to recruiting 2 into my team - it is called the "Let's Do It Now" team - because that is what we have to do - Do It Now - tomorrow may be too late!!! No-one else is going to do it for you. I am grateful every day for the rest of my health, my husband, children, home and abilities. I really do try not to moan about the things I want to change or that I am not happy about, because I think that dwelling on negative things, brings more negative things to you..I try..it is not easy every day..but every day I try..
This is not an advert for you all to set up a Kleeneze business - but if you are interested, see my website www.letsdoitnow.co.uk!!! It is however letting you know that although having Hughes Syndrome is many things - painful, depressing, debilitating, scary, unfair, sad and many many other things... it is not the end of your life and can be the beginning. Once you learn to live with it and not against it. If I had a choice of having Hughes or not, I would not have it, obviously, but I am grateful that having Hughes lead me to becoming self employed, finally spending more time with my family and making me happier and more content (and in time richer!!).
I thank you all for reading and again promise to post every week (probably Sundays).
Much love
Wend x x x x
Again my apologies for not posting for a while...busy summer getting my life back together, whatever the challenges!!
Job front - well, I tried to continue on in recruitment, got made redundant, the bottom has fallen out of recruitment consultancy, with over £3million unemployed again, who in their right mind is going to spend £2k to recruit someone, when all they have to do is place a free ad and wade through the response for nowt??!! I am sure that all will come back to them again in time, but quite a long time...not for me any more..16 years was my lot!
Telesales from home was fine, for a very short time, until I did the call lists too quickly and they ran out of customers for me to call!!! No good when childcare had already been booked and paid for in advance!! So?? what to do - I need to earn a good income, work from home as I am not well enough to do a normal 9-5 job, work around the kids as well, trying to avoid childcare after school costs - £14.60 a day!!!
I dismissed this opportunity back in May when I was first job seeking....Kleeneze - running and building my own business - retailing products via catalogue drops and also recruiting, training and mentoring a team to do the same as me...I use crutches to walk around - I get tired easily, I am in pain quite a lot....give it a go Wend and see how we can get around my "issues". Well, I learned that there are quite a few disabled people already in Kleeneze who are doing well...I read up on how they do things - trolleys to hold your catalogues, pacing yourself - delivering to 100 houses a day takes me 2 hours, it would take a healthy person about 45 minutes - but hey?? who's in a rush?? Introducing the opportunity to other people - I can do that!! I love to talk, all I have to do is pass on the opportunity DVD and tell them how I am doing, I don't have to sell any more!!! The catalogue items sell themselves, the opportunity sells itself, I just enjoy doing what I want, how I want (following a successful system) and when I want. I have no child care. I collect catalogues on a Monday that I have delivered the previous Friday and Saturday. Tuesday and Wednesday I deliver more catalogues, Thursday and Friday I collect them back up. I do some fliering and put shop cards in windows, I hand out business cards and have a website where I attract people into the business. I do as much as I want to do every day. I don't have childcare costs, I take my kids to school every day and collect them too (they love this!!). I have even offered to pick up another mum's son to reduce her childcare costs...I feel in charge of my own destiny at the moment. My Hughes symptoms are controlled, I have to take medication and I have to take lots of rest breaks and make sure that I eat sensibly. The extra exercise and fresh air that I am getting is doing me good! I may even lose some of the weight that I have gained in the last 2 years (fingers crossed).
When you have a condition like Hughes, you have to live with it, rather than against it...Hughes is not going away..I thought that I would get a cure after diagnosis - not the case, I got "management" after diagnosis, the best it is going to get..so after the disappointment of finding out that I am not going to get better...you have to do something that gives you back your power and challenges you on a daily basis...I feel mentally strong and I am confident that I can really make my life work now successfully. I aim to increase my earnings significantly and reasonably quickly, I am on my way to recruiting 2 into my team - it is called the "Let's Do It Now" team - because that is what we have to do - Do It Now - tomorrow may be too late!!! No-one else is going to do it for you. I am grateful every day for the rest of my health, my husband, children, home and abilities. I really do try not to moan about the things I want to change or that I am not happy about, because I think that dwelling on negative things, brings more negative things to you..I try..it is not easy every day..but every day I try..
This is not an advert for you all to set up a Kleeneze business - but if you are interested, see my website www.letsdoitnow.co.uk!!! It is however letting you know that although having Hughes Syndrome is many things - painful, depressing, debilitating, scary, unfair, sad and many many other things... it is not the end of your life and can be the beginning. Once you learn to live with it and not against it. If I had a choice of having Hughes or not, I would not have it, obviously, but I am grateful that having Hughes lead me to becoming self employed, finally spending more time with my family and making me happier and more content (and in time richer!!).
I thank you all for reading and again promise to post every week (probably Sundays).
Much love
Wend x x x x
Sunday, 16 August 2009
Depression for the chronically ill...
Hello there!
I was just emailing a friend who I haven't seen for a while and we have agreed to get together next week as her kids and my kids are off school. The kids can play and we can natter over coffee!! I haven't seen her for a while because she has been so down...I understand this, being chronically ill with something like Hughes is bound to have a negative impact on your mood. However, I also think that Hughes as a condition brings about depression as it affects that part of the brain with gunky blood flow...I can be very up and down with mood swings...
Treatment for depression is medication or CBT (cognitive behavioural therapy). I have had both and personally find the medication route works better for me.. I am sure that CBT works for people who are maybe getting over a trauma, but people who have a long term chronic complaint that ain't going away, need constant assistance to alter the chemical balance in their brains - this is my opinion only and what works best for me..
I have gone through many emotional stages of having this condition. Firstly there was the long road to discovery that I had a recognised condition...I doubted my symptoms, others doubted my symptoms, I had to deal with and get used to living with pain, I had the grief of losing the old Wendy who would dance on tables, I had the guilt of not being able to look after my own children, I had the rejection of being threatened with dismissal from work, I had to cope with hideous discrimination, lack of thought and hurtful comments. I was a wreck of self loathing for a while, I also went through a phase of feeling very sorry for myself. I was angry, sad, neglected, tired and lonely, all at different times and at different degrees. These are the symptoms of chronic depression. I would cry at the slightest emotional stress or strain of every day living, to the extend of being tearful a lot of the time and not being able to function around other people. I was quick tempered and prone to acts of violence, snappy, irritable and unreasonable. My expectation of how other people should behave changed, I was resentful of others who had their health and who could do the things that I couldn't. I started to become bitter and selfish. I really thought that I would have to live with these symptoms as they were part of having Hughes..until I got my medication right. I am not saying that it works 100% of the time, I still have my days, when the world is a tough and unfriendly place! but on the whole I have my depression in check and I am able to put things in perspective most of the time and make the most of what I have. I have also learned to live with Hughes, rather than existing because of it. I know my limitations now and I try to live within them, if I don't I get pay back time!! Usually in the form of 3/4 days of feeling absolutely awful!! Sometimes I push myself so that I can enjoy a special occasion or outing and plan for the fall out later.
It is sometimes a case of just keeping on keeping on going.... Sometimes you do need to get in your hole and think through your thoughts and not disturb the rest of the world, other times, you need to have a damn good shout at the world for giving you the misfortune of having this illness, other times, you need to just get on with it, cry in the shower, but keep taking the medication and do what you can...
Much love
Thanks for reading
Wend x x x x
I was just emailing a friend who I haven't seen for a while and we have agreed to get together next week as her kids and my kids are off school. The kids can play and we can natter over coffee!! I haven't seen her for a while because she has been so down...I understand this, being chronically ill with something like Hughes is bound to have a negative impact on your mood. However, I also think that Hughes as a condition brings about depression as it affects that part of the brain with gunky blood flow...I can be very up and down with mood swings...
Treatment for depression is medication or CBT (cognitive behavioural therapy). I have had both and personally find the medication route works better for me.. I am sure that CBT works for people who are maybe getting over a trauma, but people who have a long term chronic complaint that ain't going away, need constant assistance to alter the chemical balance in their brains - this is my opinion only and what works best for me..
I have gone through many emotional stages of having this condition. Firstly there was the long road to discovery that I had a recognised condition...I doubted my symptoms, others doubted my symptoms, I had to deal with and get used to living with pain, I had the grief of losing the old Wendy who would dance on tables, I had the guilt of not being able to look after my own children, I had the rejection of being threatened with dismissal from work, I had to cope with hideous discrimination, lack of thought and hurtful comments. I was a wreck of self loathing for a while, I also went through a phase of feeling very sorry for myself. I was angry, sad, neglected, tired and lonely, all at different times and at different degrees. These are the symptoms of chronic depression. I would cry at the slightest emotional stress or strain of every day living, to the extend of being tearful a lot of the time and not being able to function around other people. I was quick tempered and prone to acts of violence, snappy, irritable and unreasonable. My expectation of how other people should behave changed, I was resentful of others who had their health and who could do the things that I couldn't. I started to become bitter and selfish. I really thought that I would have to live with these symptoms as they were part of having Hughes..until I got my medication right. I am not saying that it works 100% of the time, I still have my days, when the world is a tough and unfriendly place! but on the whole I have my depression in check and I am able to put things in perspective most of the time and make the most of what I have. I have also learned to live with Hughes, rather than existing because of it. I know my limitations now and I try to live within them, if I don't I get pay back time!! Usually in the form of 3/4 days of feeling absolutely awful!! Sometimes I push myself so that I can enjoy a special occasion or outing and plan for the fall out later.
It is sometimes a case of just keeping on keeping on going.... Sometimes you do need to get in your hole and think through your thoughts and not disturb the rest of the world, other times, you need to have a damn good shout at the world for giving you the misfortune of having this illness, other times, you need to just get on with it, cry in the shower, but keep taking the medication and do what you can...
Much love
Thanks for reading
Wend x x x x
Saturday, 8 August 2009
Medications for Hughes and Lupus
Hello there folks!!
I have been a bit busy with my direct marketing business this week - Kleeneze, I am doing all the ground work and getting things all prepared - I can't walk the streets delivering catalogues, so I am devising more cunning plans to get the catalogues in front of people without walking miles!! I may even sell the jewellery that Kleeneze do - Cabouchon, on a party plan basis - this would be like history repeating itself!! My Mum sold the jewellery that my Dad made, they called it "Seer Jewellery", my maiden name spelt backwards. My Mum really did well with selling stuff, my Dad trained to pierce ears and when my Mum was doing one of the party's, my Mum would egg the girls on to get their ears pierced and then ring my Dad and he would go along and do that too!! They were ahead of their time really, quite inspirational really, my Mum did all sorts of things to have her own money, it was really important to her! Anyway...that is what I am doing, trying to earn some money somehow...I can't do a "normal" job because of having Hughes, so I am having to be creative..
I take a lot of medication every day to keep me from being bed-ridden. I take pain killers for my degenerative disc condition as well as the other aches and pains I get with having Hughes and Lupus-like symptoms, I take tramadol and paracetamol. I take an anti-inflammatory for my degenerative disc condition, plus the arthritis type of swelling I get around my joints, I take Diclofenac (Voltarol). I take my soluble Aspirin 75mg every day without fail to stop my blood from being so sticky. I take Plaquenil - Hydrochloroquinine - antimalarials every day to help with the lupus-like symptoms of aches, pains and fatigue. Since starting on this drug, my headaches have improved and I am generally less achy. I also take an anti-depressant every evening, to help me sleep and help with the anxiety of having a long term degenerative condition. I had a bout of depression in 2002 after a particularly nasty divorce. A lot of things came out from my past during some counselling I received at that point and I have had to take anti-depressants on and off since getting ill in 2007. Being ill on a long term basis is a lot to deal with emotionally. I believe that depression is part of Hughes/APS as well though, I think our sludgy blood does affect our emotions and the parts of our brains that control happiness. I am able to have up to 3 steroid injections a year which boost me, I had my last one in May down at the Lupus Centre and I am doing quite well on it actually. I must say that the increase in Plaquenil and the steroid jab have made June and July much better months for me. I took Gabappentin for a while, but it really increased my appetite and I have put on weight that I just can't lose again! Gabappentin works on your brain to alleviate nerve pain - it is sometimes given to people who get seizures or who are epileptic. If the nerve pain does get too much I use it, but come off it as soon as I can again...you do have to come off it gradually though.
Being ill on a long term basis, with little chance of improving to a much better degree is like a form of bereavement. I miss the old Wendy, the Wendy that would dance on tables, laugh, run, joke, get drunk, flirt, do outrageous things....ok, some of these things you have to give up with age, but when you don't have a choice to not do them any more, that hurts. I grieve for the "old Wendy" who would dash everywhere, think nothing of driving 3 hours and then go out til 4am dancing and drinking..The thought of a full on evening out, scares me, I get very het up that I will spoil things for others, be a party pooper or embarrass myself or my family. I do try to still attend things, but it is difficult for me to host any events any more and it is too much to ask my husband to do it, he is not that type and he has enough to do...I do miss throwing a party and being the centre of attention for the right reason. I hate being the centre of attention for the wrong reason - being asked what's wrong? are you alright??? I know that people are curious and care, but I hate talking about being ill, I am ill all the time, so I want to talk about something else!!!
Well, I had better sign off for now, I have stuff to do, hubbie is cleaning cars and mowing grass, it is a lovely day, but I can't sit in it or I will burn and then feel awful...
Take care and thanks for reading.
Much love
Wendy x x x x
I have been a bit busy with my direct marketing business this week - Kleeneze, I am doing all the ground work and getting things all prepared - I can't walk the streets delivering catalogues, so I am devising more cunning plans to get the catalogues in front of people without walking miles!! I may even sell the jewellery that Kleeneze do - Cabouchon, on a party plan basis - this would be like history repeating itself!! My Mum sold the jewellery that my Dad made, they called it "Seer Jewellery", my maiden name spelt backwards. My Mum really did well with selling stuff, my Dad trained to pierce ears and when my Mum was doing one of the party's, my Mum would egg the girls on to get their ears pierced and then ring my Dad and he would go along and do that too!! They were ahead of their time really, quite inspirational really, my Mum did all sorts of things to have her own money, it was really important to her! Anyway...that is what I am doing, trying to earn some money somehow...I can't do a "normal" job because of having Hughes, so I am having to be creative..
I take a lot of medication every day to keep me from being bed-ridden. I take pain killers for my degenerative disc condition as well as the other aches and pains I get with having Hughes and Lupus-like symptoms, I take tramadol and paracetamol. I take an anti-inflammatory for my degenerative disc condition, plus the arthritis type of swelling I get around my joints, I take Diclofenac (Voltarol). I take my soluble Aspirin 75mg every day without fail to stop my blood from being so sticky. I take Plaquenil - Hydrochloroquinine - antimalarials every day to help with the lupus-like symptoms of aches, pains and fatigue. Since starting on this drug, my headaches have improved and I am generally less achy. I also take an anti-depressant every evening, to help me sleep and help with the anxiety of having a long term degenerative condition. I had a bout of depression in 2002 after a particularly nasty divorce. A lot of things came out from my past during some counselling I received at that point and I have had to take anti-depressants on and off since getting ill in 2007. Being ill on a long term basis is a lot to deal with emotionally. I believe that depression is part of Hughes/APS as well though, I think our sludgy blood does affect our emotions and the parts of our brains that control happiness. I am able to have up to 3 steroid injections a year which boost me, I had my last one in May down at the Lupus Centre and I am doing quite well on it actually. I must say that the increase in Plaquenil and the steroid jab have made June and July much better months for me. I took Gabappentin for a while, but it really increased my appetite and I have put on weight that I just can't lose again! Gabappentin works on your brain to alleviate nerve pain - it is sometimes given to people who get seizures or who are epileptic. If the nerve pain does get too much I use it, but come off it as soon as I can again...you do have to come off it gradually though.
Being ill on a long term basis, with little chance of improving to a much better degree is like a form of bereavement. I miss the old Wendy, the Wendy that would dance on tables, laugh, run, joke, get drunk, flirt, do outrageous things....ok, some of these things you have to give up with age, but when you don't have a choice to not do them any more, that hurts. I grieve for the "old Wendy" who would dash everywhere, think nothing of driving 3 hours and then go out til 4am dancing and drinking..The thought of a full on evening out, scares me, I get very het up that I will spoil things for others, be a party pooper or embarrass myself or my family. I do try to still attend things, but it is difficult for me to host any events any more and it is too much to ask my husband to do it, he is not that type and he has enough to do...I do miss throwing a party and being the centre of attention for the right reason. I hate being the centre of attention for the wrong reason - being asked what's wrong? are you alright??? I know that people are curious and care, but I hate talking about being ill, I am ill all the time, so I want to talk about something else!!!
Well, I had better sign off for now, I have stuff to do, hubbie is cleaning cars and mowing grass, it is a lovely day, but I can't sit in it or I will burn and then feel awful...
Take care and thanks for reading.
Much love
Wendy x x x x
Tuesday, 4 August 2009
What hurts today??
Hello there!
I am not actually that bad today, a bit achy from being out and about with Caitlan yesterday, but not bad, for me!
My ankles are swollen, they swell every day, the doctor thinks it is the strain on my kidneys from the medication I take every day. I have numbness in my fingers, which is annoying as I am having to type every word of this about 5 times each because my fingers aren't going where I think they are! I have a lot of pain in my mid section today, which is usual, pains around my ribs and sternum which keeps catching my breath..I did have a headache when I woke up, but I have had a bit of fresh air this morning and it has now gone..
Every day I awake to different symptoms or my symptoms in different degrees of severity!! These symptoms can last all day, a minute, an hour or a few hours, I never know...I have now got to a stage where I consider each symptom, but I can't linger on it, otherwise I would not get on with anything else all day! I have times where the symptoms aren't controlled by medication and I can't ignore them, or I have too much time on my hands and I think about them too much...I have to keep busy either by being with other people or by doing many different tasks... If I sit still too long and say..watch TV, I get fidgety, it allows me to feel my symptoms and then I get in to real pain..I know the pain is real and I am not imagining it, but if I try to forget it, it does go to the back of my mind a lot of the time.. Mind over matter and sheer bloodyminded-ness otherwise I would never get out of bed!
I have to be really careful with others who are ill though, my sensitivity for pain is huge, I used to be a very sympathetic nurse, but living with pain every day does harden you, the more pain you have, the better you deal with it I think. I have to remind myself to acknowledge one of the kids "hurts" or my husband having a "sore back". "Sore back??" - you don't know what a sore back is!!?? I have to stop myself saying this, "Welcome to my world" springs to mind, but I can't say it as I have to empathise and acknowledge how ill or tired someone else feels. Just because I am tired and in pain all the time, doesn't make their pain any less...in fact, because they are not used to being in pain, their pain is all the worse!
Some people close to me have commented that they realise how I feel now if they come down with flu or a heavy cold, but this is how I feel every day, they are going to get over their flu in a few days..living with Hughes or any other autoimmune condition means that the flu like symptoms can happen every day, or an hour a day or even come and go during the day, very unpredictable.
The unpredictability of this syndrome is very difficult to cope with as it becomes hard to plan events, social meet ups and occasions. I cannot tell how I am going to be from one minute to the next, never mind next June 14th??!! I went to my nephew's wedding last month, it was great to see everyone and the kids had a fabulous weekend. We travelled down to the midlands on the Friday evening and spent the night with one sister, to then have the wedding the following day with another sister..by 5pm I was ready for bed! I was very tired, in pain, as well as being frustrated with myself for being like this...I stayed until the end of the evening and I was glad that I did, but the following week I was really not good at all.. I wouldn't have missed it for the world though, I just can't do it every weekend!! I really do try to do as much as I used to, but I also have to pace myself, otherwise I can make myself really unwell. My husband is good at knowing that I need to get some space and relaxation and soon takes the kids out so that I can have a rest or do what I need to do - shower, bed, lie on the floor, whatever helps me..
Thanks for reading
With love
Wend x x x x
I am not actually that bad today, a bit achy from being out and about with Caitlan yesterday, but not bad, for me!
My ankles are swollen, they swell every day, the doctor thinks it is the strain on my kidneys from the medication I take every day. I have numbness in my fingers, which is annoying as I am having to type every word of this about 5 times each because my fingers aren't going where I think they are! I have a lot of pain in my mid section today, which is usual, pains around my ribs and sternum which keeps catching my breath..I did have a headache when I woke up, but I have had a bit of fresh air this morning and it has now gone..
Every day I awake to different symptoms or my symptoms in different degrees of severity!! These symptoms can last all day, a minute, an hour or a few hours, I never know...I have now got to a stage where I consider each symptom, but I can't linger on it, otherwise I would not get on with anything else all day! I have times where the symptoms aren't controlled by medication and I can't ignore them, or I have too much time on my hands and I think about them too much...I have to keep busy either by being with other people or by doing many different tasks... If I sit still too long and say..watch TV, I get fidgety, it allows me to feel my symptoms and then I get in to real pain..I know the pain is real and I am not imagining it, but if I try to forget it, it does go to the back of my mind a lot of the time.. Mind over matter and sheer bloodyminded-ness otherwise I would never get out of bed!
I have to be really careful with others who are ill though, my sensitivity for pain is huge, I used to be a very sympathetic nurse, but living with pain every day does harden you, the more pain you have, the better you deal with it I think. I have to remind myself to acknowledge one of the kids "hurts" or my husband having a "sore back". "Sore back??" - you don't know what a sore back is!!?? I have to stop myself saying this, "Welcome to my world" springs to mind, but I can't say it as I have to empathise and acknowledge how ill or tired someone else feels. Just because I am tired and in pain all the time, doesn't make their pain any less...in fact, because they are not used to being in pain, their pain is all the worse!
Some people close to me have commented that they realise how I feel now if they come down with flu or a heavy cold, but this is how I feel every day, they are going to get over their flu in a few days..living with Hughes or any other autoimmune condition means that the flu like symptoms can happen every day, or an hour a day or even come and go during the day, very unpredictable.
The unpredictability of this syndrome is very difficult to cope with as it becomes hard to plan events, social meet ups and occasions. I cannot tell how I am going to be from one minute to the next, never mind next June 14th??!! I went to my nephew's wedding last month, it was great to see everyone and the kids had a fabulous weekend. We travelled down to the midlands on the Friday evening and spent the night with one sister, to then have the wedding the following day with another sister..by 5pm I was ready for bed! I was very tired, in pain, as well as being frustrated with myself for being like this...I stayed until the end of the evening and I was glad that I did, but the following week I was really not good at all.. I wouldn't have missed it for the world though, I just can't do it every weekend!! I really do try to do as much as I used to, but I also have to pace myself, otherwise I can make myself really unwell. My husband is good at knowing that I need to get some space and relaxation and soon takes the kids out so that I can have a rest or do what I need to do - shower, bed, lie on the floor, whatever helps me..
Thanks for reading
With love
Wend x x x x
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