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
Sunday, 16 August 2009
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
Saturday, 1 August 2009
Word Finding Problems with Hughes and possible TIAs
Hello there!!
I thought that I would try to add more information to this blog on how Hughes can affect you in very different and very strange ways...I am a talker, always have been, always will be...I have worked in sales for the last 16 years, I am one of 5 children who all talk ten to the dozen, the noise is deafening if we are all in the same room! Our Mum and Dad were talkers, Mum was a natural sales woman, loved a gossip and would chat for hours and recall anecdotes of what us kids have done or said over the years. Dad talked - at people sometimes, but he liked to debate and put the world to rights! I spent a few years with him as an adult one to one, Mum had died and all the rest of my brothers and sisters had left home, so that left me and Dad, we rubbed along pretty well for those years and talked a lot.
When I met my husband, we hit it off straight away. Even so, he is not a talker, he is not a very good listener either, he will admit to that, but I have got used to silences from him and of course, they are comfortable silences, because he is my husband. My children talk, both of them talked early in the their development, they laugh, scream, shout and chatter most of the time. I talk a great deal with them, there is always noise and talk in our house...
December 2008 I couldn't talk for about a minute - I wanted to talk, but nothing would come out...the words were in my head, but the sounds wouldn't come out, only for about a minute..but boy was that scary!! I was tired and feeling very poorly at the time. I possibly had a TIA (transient ischemic attack - mini stroke) we shall never know for sure because the symptoms were there and then were gone as quickly as they came...
When I get fatigued, I can't think of words for items, or I say the wrong words for things...much to the amusement of the children!! I sometimes get through half a sentence and then can't finish it!! the children do!! This works well for them if punishment is the last half of the sentence, they can give themselves more lenient sentences!! If I had got the full sentence out, they would have been grounded for a week and not sent to their rooms like they finish my sentence with!! They work the system at times, I get frustrated, but it is funny at other times also...It wouldn't bother me as much if I wasn't a natural talker I suppose.. When you are used to talking all the time, being witty, sarcastic and clever with words, it takes a bit of your personality away, when you can't do it any more and that is sad!! Timing is everything in comedy they say and if I can't get the punchline out, the joke is not funny any more!!
The strange thing is that I type much faster than I can talk and I complete sentences without problem when I either type or write them down??? All very odd and obviously a different part of my brain is being affected by my sludgy blood which affects how I talk, but not how I type??
It isn't a life threatening or painful symptom of Hughes, but it is a frustrating one and something that chips away at your confidence and gives you a daily reminder of being a Hughes sufferer.
Thanks for reading!
Much love
Wendy x x x x
I thought that I would try to add more information to this blog on how Hughes can affect you in very different and very strange ways...I am a talker, always have been, always will be...I have worked in sales for the last 16 years, I am one of 5 children who all talk ten to the dozen, the noise is deafening if we are all in the same room! Our Mum and Dad were talkers, Mum was a natural sales woman, loved a gossip and would chat for hours and recall anecdotes of what us kids have done or said over the years. Dad talked - at people sometimes, but he liked to debate and put the world to rights! I spent a few years with him as an adult one to one, Mum had died and all the rest of my brothers and sisters had left home, so that left me and Dad, we rubbed along pretty well for those years and talked a lot.
When I met my husband, we hit it off straight away. Even so, he is not a talker, he is not a very good listener either, he will admit to that, but I have got used to silences from him and of course, they are comfortable silences, because he is my husband. My children talk, both of them talked early in the their development, they laugh, scream, shout and chatter most of the time. I talk a great deal with them, there is always noise and talk in our house...
December 2008 I couldn't talk for about a minute - I wanted to talk, but nothing would come out...the words were in my head, but the sounds wouldn't come out, only for about a minute..but boy was that scary!! I was tired and feeling very poorly at the time. I possibly had a TIA (transient ischemic attack - mini stroke) we shall never know for sure because the symptoms were there and then were gone as quickly as they came...
When I get fatigued, I can't think of words for items, or I say the wrong words for things...much to the amusement of the children!! I sometimes get through half a sentence and then can't finish it!! the children do!! This works well for them if punishment is the last half of the sentence, they can give themselves more lenient sentences!! If I had got the full sentence out, they would have been grounded for a week and not sent to their rooms like they finish my sentence with!! They work the system at times, I get frustrated, but it is funny at other times also...It wouldn't bother me as much if I wasn't a natural talker I suppose.. When you are used to talking all the time, being witty, sarcastic and clever with words, it takes a bit of your personality away, when you can't do it any more and that is sad!! Timing is everything in comedy they say and if I can't get the punchline out, the joke is not funny any more!!
The strange thing is that I type much faster than I can talk and I complete sentences without problem when I either type or write them down??? All very odd and obviously a different part of my brain is being affected by my sludgy blood which affects how I talk, but not how I type??
It isn't a life threatening or painful symptom of Hughes, but it is a frustrating one and something that chips away at your confidence and gives you a daily reminder of being a Hughes sufferer.
Thanks for reading!
Much love
Wendy x x x x
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