Monday 9 December 2013
Dear Diary,
Just kidding! But this is basically my diary isn't it? I've not written a post for a while now...I've been a busy little lady! I've gone and got myself a job! Well I'm just working one day a week which is perfect as I'm not sure I could handle anymore than that at the moment. This cold weather is making my life very difficult! I literally feel like an old lady. Anyway so I'm enjoying my job. I'm working with my best friend as her admin assistant - yep my friend is my boss! Lol. She's been saying she's really busy and could do with a hand so I said well what about me? She spoke to her boss and he gave her the go ahead so now I go in one day a week and help her with bits and bobs - nothing too taxing or stressful. It's perfect! And even better, it doesn't effect my benefits because I'm working less than 16 hours a week. As Sil is my boss it means I don't have to worry about taking time off etc because obviously she knows all about my illnesses and said I can do one day a week and if I can't make it one week then just do 2 days the next week or whatever I feel comfortable with. The manager of the company knows my story too but he's just said to Sil to do whatever she wants. It's so nice to have a job again but not to have to push myself too hard and it's great to have a job where there's no pressure. I can just go in, do what Sil wants me to do and go home and I don't have to worry about anything. I hope I can work full time again one day but right now this suits me perfectly. Yey!
Sil and I actually had our first jobs together when we left college Sil got a job at RBS and when they had an opening she put me forward and I got the job. That was exactly ten years ago. Wow. Sorry I think I mentioned that in my previous post? Ah well.
So what else have I been up to?
I've had a mixture of great days and very, very bad days. Today has been a pretty rough day but I've had a busy weekend (much busier than usual) so now i'm suffering. We went to a friend's engagement party on Friday and ended up staying out till around 4am (whoops) and we had the panto on Saturday. Sami's Mum and her husband Chris organised a family day out with Sami, me, Ela and Emrah (sami's sister and brother) Emrah's wife Tonya and their little boy Em-J and Chris's grandson Harrison. Ela's fiance was too poorly to come bless him. Sami and I nearly had to cancel too we were absolutely hanging. But we couldn't not go because it was self inflicted and our own fault, however, I do not advise the panto with a hangover. Ohmygod. Screaming children, singing, jolly people, dancing, people having fun. No. Just no. Although I must admit, I did enjoy it through the waves of sickness that kept coming over me but next year I'll make sure I have an early night. With a cocoa. After the panto we went out for dinner to one of my favourite Turkish restaurants and it was lovely. Defo cured the wine/cocktail/vodka hangover I had going on.
On Sunday we had our annual pretend Christmas dinner at Sami's Mums. Viki and Chris go away to the Maldives every Christmas so we have a family dinner before they go and that way no one misses out. It was fabulous! Chris cooked for 15 people and everything was perfect! We do the whole thing - Turkey and all the trimmings, Christmas music, crackers, presents etc.
Here's the turkey:
How freaking awesome is this Turkey!!!
And Today I have suffered. I'd love to just be able to do stuff and not suffer like a bitch afterwards. Jesus Christ I've been in so much pain today. It's horrendous it really is. Even when I feel 'good' I'm still in pain, just not as much pain. I genuinely cannot remember what it feels like to have a pain free day. I would jump around like a lunatic! I'd be doing gymnastics and all sorts!
I had a terrible time last week - I had Lupus rashes, fevers, swollen joints, migraines, the lot. It was BAD. And then I improved and went and got very drunk and suffered with a hungover! Stupid really. But when I'm well (or should I said when I'm not as bad) I just want to have fun and enjoy it. One day I'll get the balance right!
Here's some pics of last week:
Lupus rash which felt like sun burn
I ended up going to my Mum's on this day because I felt so awful I didn't want to be alone. At 28 I still want my Mummy when I'm suffering! She looked after me in only the way a Mum can.
Lumpy, swollen fingers which were so painful I could barely move them
And here's me saying fuck you Lupus!
And here's me being miserable - this was pretty much my facial expression for the whole week:
Quite a few people have asked me recently (because they've had horrible colds so have been in bed unwell) 'how do you do it? You must get so bored?' I never really know what to say because obviously I do get bored. Like last week for example, I was in bed for most of it and of course it's boring but what can I do? I just moan on facebook, post selfies on instagram 9see above) and watch shite on TV. I don't know what else there is to do. I can't always read a book because the brain fog that comes with a flare doesn't enable me to concentrate for long periods and obviously pain can ruin your concentration and then sometimes I can't physically hold my kindle or a book. So it's shite on TV and facebook. Or sleeping. I spend a lot of my time asleep. I probably sleep for 2 hours during the day because I don't sleep well at night due to the fecking night sweats. 7 times I woke up with a soaked pyjama top last night. For me, it's one of the most distressing symptoms because I just want to sleep a whole night but in over 5 years I haven't, it's either pain or night sweats. I wake up on average 5 times a night shivering from cold sweat. I have to get up, wash, change my top, get back into bed and an hour later it happens all over again. It's partly why I can't work full time because I'm knackered and then you can add pain and brain fog to the mix and I'm useless! Plus a symptom of Lupus is fatigue and by fatigue I think they mean exhaustion. Even with sleep most Lupus sufferers live with daily exhaustion. This is my worst symptom. I hate it. Its changed who I am because I can't physically do all the things I used to do and want to do. I've tried many times to explain the level of tiredness Lupus causes but I can't. I'd never, ever felt anything like it until I had Lupus. People always imagine pain to be worse than tiredness but the fatigue that comes with Lupus is much worse than the pain. Don't get me wrong the pain is horrendous but you can take painkillers, have a bath, go to sleep, distract yourself but there's nothing you can do about the fatigue. Even sleeping for 12 hours doesn't help, I'll still wake up just as knackered. Sometimes you can't think, sometimes breathing feels like a chore. I'm not sure how many other Lupies would agree with me but I'm sure quite a few would.
I'd love to be one of those inspirational people that people say 'oh she never moans, just gets on with it' etc but that's not me! I like moaning! I like people to know what I'm going through! However, the main reason for this blog was to raise awareness as there are so many people who have never heard of Lupus (myself included before I was diagnosed) and people actually die from it so I think it's mad that people don't know anything about it. It's more common than MS, Cystic Fibrosis and HIV combined yet no one knows about it. I thought if I help raise awareness then more people will get diagnosed before anything serious happens. If I wasn't pushy with my doctors it could have taken even longer and I could have been a lot more ill. Anyway so thats the aim but then it ended up being like a form of therapy. I'd log on, whinge about what a terrible time I'm having and feel so much better. Because you can't go round to your friends and family and moan all the time. No one wants to hear it all the time so this way I get to say everything I want and not annoy people! Well maybe I annoy people that read this but you don't have to read it so that's your fault!
I've lost my train of thought now....hmmm. I'm working tomorrow and after work we are going to a pub quiz (provided I'm not too knackered) then on Wednesday I'm going to stay indoors in my onesie all day as I've done all the housework today (good girl I am) then on Thursday I'm going to pop up town and get me a dress for our engagement party on Saturday. I can't wait! All our friends and family in one room! Yey! I might even get some new shoes...I am a working woman now after all. I deserve new shoes. Yes.Yes I do.
I had better get to bed now seeing as I'm working tomorrow. Hopefully no night sweats tonight. Please! Just for one night! God I'd do anything for a proper nights sleep!
Dear Diary,
Just kidding! But this is basically my diary isn't it? I've not written a post for a while now...I've been a busy little lady! I've gone and got myself a job! Well I'm just working one day a week which is perfect as I'm not sure I could handle anymore than that at the moment. This cold weather is making my life very difficult! I literally feel like an old lady. Anyway so I'm enjoying my job. I'm working with my best friend as her admin assistant - yep my friend is my boss! Lol. She's been saying she's really busy and could do with a hand so I said well what about me? She spoke to her boss and he gave her the go ahead so now I go in one day a week and help her with bits and bobs - nothing too taxing or stressful. It's perfect! And even better, it doesn't effect my benefits because I'm working less than 16 hours a week. As Sil is my boss it means I don't have to worry about taking time off etc because obviously she knows all about my illnesses and said I can do one day a week and if I can't make it one week then just do 2 days the next week or whatever I feel comfortable with. The manager of the company knows my story too but he's just said to Sil to do whatever she wants. It's so nice to have a job again but not to have to push myself too hard and it's great to have a job where there's no pressure. I can just go in, do what Sil wants me to do and go home and I don't have to worry about anything. I hope I can work full time again one day but right now this suits me perfectly. Yey!
Sil and I actually had our first jobs together when we left college Sil got a job at RBS and when they had an opening she put me forward and I got the job. That was exactly ten years ago. Wow. Sorry I think I mentioned that in my previous post? Ah well.
So what else have I been up to?
I've had a mixture of great days and very, very bad days. Today has been a pretty rough day but I've had a busy weekend (much busier than usual) so now i'm suffering. We went to a friend's engagement party on Friday and ended up staying out till around 4am (whoops) and we had the panto on Saturday. Sami's Mum and her husband Chris organised a family day out with Sami, me, Ela and Emrah (sami's sister and brother) Emrah's wife Tonya and their little boy Em-J and Chris's grandson Harrison. Ela's fiance was too poorly to come bless him. Sami and I nearly had to cancel too we were absolutely hanging. But we couldn't not go because it was self inflicted and our own fault, however, I do not advise the panto with a hangover. Ohmygod. Screaming children, singing, jolly people, dancing, people having fun. No. Just no. Although I must admit, I did enjoy it through the waves of sickness that kept coming over me but next year I'll make sure I have an early night. With a cocoa. After the panto we went out for dinner to one of my favourite Turkish restaurants and it was lovely. Defo cured the wine/cocktail/vodka hangover I had going on.
On Sunday we had our annual pretend Christmas dinner at Sami's Mums. Viki and Chris go away to the Maldives every Christmas so we have a family dinner before they go and that way no one misses out. It was fabulous! Chris cooked for 15 people and everything was perfect! We do the whole thing - Turkey and all the trimmings, Christmas music, crackers, presents etc.
Here's the turkey:
How freaking awesome is this Turkey!!!
And Today I have suffered. I'd love to just be able to do stuff and not suffer like a bitch afterwards. Jesus Christ I've been in so much pain today. It's horrendous it really is. Even when I feel 'good' I'm still in pain, just not as much pain. I genuinely cannot remember what it feels like to have a pain free day. I would jump around like a lunatic! I'd be doing gymnastics and all sorts!
I had a terrible time last week - I had Lupus rashes, fevers, swollen joints, migraines, the lot. It was BAD. And then I improved and went and got very drunk and suffered with a hungover! Stupid really. But when I'm well (or should I said when I'm not as bad) I just want to have fun and enjoy it. One day I'll get the balance right!
Here's some pics of last week:
Lupus rash which felt like sun burn
I ended up going to my Mum's on this day because I felt so awful I didn't want to be alone. At 28 I still want my Mummy when I'm suffering! She looked after me in only the way a Mum can.
Lumpy, swollen fingers which were so painful I could barely move them
And here's me saying fuck you Lupus!
And here's me being miserable - this was pretty much my facial expression for the whole week:
Quite a few people have asked me recently (because they've had horrible colds so have been in bed unwell) 'how do you do it? You must get so bored?' I never really know what to say because obviously I do get bored. Like last week for example, I was in bed for most of it and of course it's boring but what can I do? I just moan on facebook, post selfies on instagram 9see above) and watch shite on TV. I don't know what else there is to do. I can't always read a book because the brain fog that comes with a flare doesn't enable me to concentrate for long periods and obviously pain can ruin your concentration and then sometimes I can't physically hold my kindle or a book. So it's shite on TV and facebook. Or sleeping. I spend a lot of my time asleep. I probably sleep for 2 hours during the day because I don't sleep well at night due to the fecking night sweats. 7 times I woke up with a soaked pyjama top last night. For me, it's one of the most distressing symptoms because I just want to sleep a whole night but in over 5 years I haven't, it's either pain or night sweats. I wake up on average 5 times a night shivering from cold sweat. I have to get up, wash, change my top, get back into bed and an hour later it happens all over again. It's partly why I can't work full time because I'm knackered and then you can add pain and brain fog to the mix and I'm useless! Plus a symptom of Lupus is fatigue and by fatigue I think they mean exhaustion. Even with sleep most Lupus sufferers live with daily exhaustion. This is my worst symptom. I hate it. Its changed who I am because I can't physically do all the things I used to do and want to do. I've tried many times to explain the level of tiredness Lupus causes but I can't. I'd never, ever felt anything like it until I had Lupus. People always imagine pain to be worse than tiredness but the fatigue that comes with Lupus is much worse than the pain. Don't get me wrong the pain is horrendous but you can take painkillers, have a bath, go to sleep, distract yourself but there's nothing you can do about the fatigue. Even sleeping for 12 hours doesn't help, I'll still wake up just as knackered. Sometimes you can't think, sometimes breathing feels like a chore. I'm not sure how many other Lupies would agree with me but I'm sure quite a few would.
I'd love to be one of those inspirational people that people say 'oh she never moans, just gets on with it' etc but that's not me! I like moaning! I like people to know what I'm going through! However, the main reason for this blog was to raise awareness as there are so many people who have never heard of Lupus (myself included before I was diagnosed) and people actually die from it so I think it's mad that people don't know anything about it. It's more common than MS, Cystic Fibrosis and HIV combined yet no one knows about it. I thought if I help raise awareness then more people will get diagnosed before anything serious happens. If I wasn't pushy with my doctors it could have taken even longer and I could have been a lot more ill. Anyway so thats the aim but then it ended up being like a form of therapy. I'd log on, whinge about what a terrible time I'm having and feel so much better. Because you can't go round to your friends and family and moan all the time. No one wants to hear it all the time so this way I get to say everything I want and not annoy people! Well maybe I annoy people that read this but you don't have to read it so that's your fault!
I've lost my train of thought now....hmmm. I'm working tomorrow and after work we are going to a pub quiz (provided I'm not too knackered) then on Wednesday I'm going to stay indoors in my onesie all day as I've done all the housework today (good girl I am) then on Thursday I'm going to pop up town and get me a dress for our engagement party on Saturday. I can't wait! All our friends and family in one room! Yey! I might even get some new shoes...I am a working woman now after all. I deserve new shoes. Yes.Yes I do.
I had better get to bed now seeing as I'm working tomorrow. Hopefully no night sweats tonight. Please! Just for one night! God I'd do anything for a proper nights sleep!
Loved today's blog xxx
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