Tuesday 24 June 2014
Weekly Update
Hello my lovelies,
I hope you are all well.
I have had a bit of an up and down week. It was my anniversary on Sunday and I was in so much pain that I didn't get to enjoy it. In fact I was trying to edit my wedding dvd and ended up getting really emotional and having a melt down.
I was watching myself and although at the time I was sick with my ulcers and stuff, my pain and fatigue and stuff wasn't at the stage it is now. I was still able to work. I was still able to have a normal life. Through the sickness and tiredness then I was still able to enjoy a fortnight in Florida. I miss that. I miss so much of my life. I just got so sad, and broke down and then cried even more thinking of how much I miss my daddy in law and how amazingly supportive he was of me. I have actually felt really depressed lately, and it has been largely to do with losing one of the closest people to me. It has caused a huge set back in my condition. I had been doing so well for a few months and was able to look after him. I knew that the chances were that I would lose all the progress after he would pass away, because as we know traumatic events can cause flares.
I am having to go to the doctors again about medication because I am fed up being in agony even though I am taking anti inflammatory tablets and tramadol. In fact I have been taking co codomol on top of that and it isnt sorting it. I am feeling my right shoulder get bad again. It was this time last year I had my injection. Which really helped as it the physio but now I am getting so much pain again.
It is so frustrating because I am trying to build up my career and actually work from home so that I don't have to rely on benefits. I want to make something of myself. I am not the type of person that copes easily with not being able to work. I don't look down on those who aren't working, I just go crazy not having something to do, as I am sure a lot of you do. I love what I do, nails and make up and I am so excited being able to do spray tans now too. I cannot wait to get clients in and do that. So amazing. I love it. It is the most fun job ever. If only my stupid body wouldn't crap out on me so much. I am hoping in a years time to open a salon of my own. Of course I will probably rent out space or hire people who knows but for now I really need to build up and actually get my confidence back. I need to be fitter for it too though. Right now my body is only allowing part time hours. Which I have to be ok with. But that wont work if I own my own place...
Eughhhhh Anyway after not getting much sleep last night I am starting to get really tired. The pain is starting to increase and push through again, but I am hoping that I get over soon.
How are you guys doing? Are you having an ok week?
Love you all so much,
Lynds, xxxxxxxx
I hope you are all well.
I have had a bit of an up and down week. It was my anniversary on Sunday and I was in so much pain that I didn't get to enjoy it. In fact I was trying to edit my wedding dvd and ended up getting really emotional and having a melt down.
I was watching myself and although at the time I was sick with my ulcers and stuff, my pain and fatigue and stuff wasn't at the stage it is now. I was still able to work. I was still able to have a normal life. Through the sickness and tiredness then I was still able to enjoy a fortnight in Florida. I miss that. I miss so much of my life. I just got so sad, and broke down and then cried even more thinking of how much I miss my daddy in law and how amazingly supportive he was of me. I have actually felt really depressed lately, and it has been largely to do with losing one of the closest people to me. It has caused a huge set back in my condition. I had been doing so well for a few months and was able to look after him. I knew that the chances were that I would lose all the progress after he would pass away, because as we know traumatic events can cause flares.
I am having to go to the doctors again about medication because I am fed up being in agony even though I am taking anti inflammatory tablets and tramadol. In fact I have been taking co codomol on top of that and it isnt sorting it. I am feeling my right shoulder get bad again. It was this time last year I had my injection. Which really helped as it the physio but now I am getting so much pain again.
It is so frustrating because I am trying to build up my career and actually work from home so that I don't have to rely on benefits. I want to make something of myself. I am not the type of person that copes easily with not being able to work. I don't look down on those who aren't working, I just go crazy not having something to do, as I am sure a lot of you do. I love what I do, nails and make up and I am so excited being able to do spray tans now too. I cannot wait to get clients in and do that. So amazing. I love it. It is the most fun job ever. If only my stupid body wouldn't crap out on me so much. I am hoping in a years time to open a salon of my own. Of course I will probably rent out space or hire people who knows but for now I really need to build up and actually get my confidence back. I need to be fitter for it too though. Right now my body is only allowing part time hours. Which I have to be ok with. But that wont work if I own my own place...
Eughhhhh Anyway after not getting much sleep last night I am starting to get really tired. The pain is starting to increase and push through again, but I am hoping that I get over soon.
How are you guys doing? Are you having an ok week?
Love you all so much,
Lynds, xxxxxxxx
Monday 16 June 2014
Tuesday 10 June 2014
Overdid it again!!
Hey my darlings,
Well lets recap the last few days.
Saturday I went out for two hours in the afternoon to Boucher Road to do a little shopping, then had dinner in my inlaws and chilled the rest of the evening.
Sunday I hardly slept so passed on morning service at church, got up in time to be picked up by Lynne to go take Toby to Pets at home for a muzzle then brought him home. Walked him once before we went out and that was it. Went to church on sunday evening, then visited my mummy who is sick, then came home did a couple of videos for youtube and hit the hay.
Monday I got up around 10, did some editing and advertising and then went to pick up mum in law to go to Ikea, walked the dog first. So anyway Ikea we walked around the top level first, then had lunch then went downstairs.
So for most people that is not a lot!! For me it used to be nothing and I could've done much more.... Well this is what happened. Half way round the second level my hips and knees really started aching. By the time we were at the check out I was bent over with the pain in the small of my back, it didn't help that we had to stand there for ages. By the time we dropped mum off and I got home I was so shaky and dizzy and my head was so cloudy. I made tea for Thomas and lay down beside him. I think that was around 4.... So that was me until this afternoon around 2. I was in bed, couldn't do anything. Well before I got too bad I made myself a bacon butty and I wish I hadn't. I have been trying to have nothing with gluten in it but I had nothing else in the house. I wish I had just had the bacon. My stomach was in turmoil all through the night as well. I have to say I am really seeing the effects of gluten in my body. It really is a massive difference. So it has reassured me I am doing the right thing going off gluten.
Anyway I sat watching How I met your Mother on my Ipad last night and then before midnight I turned it off and I actually slept. I wish I could say, though, that my sleep was restful. It never is. Especially not when I am in a bad way pain wise. I have really bad nightmares. Crazy wacko nightmares. I was a vampire and we were getting hunted by people was one of them. In another I was in hiding for something. All of them had something to do with people being after me. I know there is a meaning behind it. Like no matter what I do my illness is always there wanting to take me down. I dunno lol. I think too much sometimes lol.
Every part of me aches. My fingers hurt typing but I have to push through and try and stay out of bed. I don't want to end up in bed for days, which is what this illness wants. I am shaking too. Do you guys get the shakes a lot? My neck hurts. I really need to get one of those rests for a laptop that the screen is higher and you can still type, because looking down at it is stretching my neck and shoulder muscles and causing an obscene amount of pain. So I guess I should go and sign off now.
I will check back in tomorrow and let you guys know how I am. I am going to post a video for my fibro episode showing the effects of being out and about. Really think it would be good rather than just talking about it here.
Anyway, how are you guys? How is your pain levels?
Lots of love and hugs to you.
Lynds, xxxxxx
Well lets recap the last few days.
Saturday I went out for two hours in the afternoon to Boucher Road to do a little shopping, then had dinner in my inlaws and chilled the rest of the evening.
Sunday I hardly slept so passed on morning service at church, got up in time to be picked up by Lynne to go take Toby to Pets at home for a muzzle then brought him home. Walked him once before we went out and that was it. Went to church on sunday evening, then visited my mummy who is sick, then came home did a couple of videos for youtube and hit the hay.
Monday I got up around 10, did some editing and advertising and then went to pick up mum in law to go to Ikea, walked the dog first. So anyway Ikea we walked around the top level first, then had lunch then went downstairs.
So for most people that is not a lot!! For me it used to be nothing and I could've done much more.... Well this is what happened. Half way round the second level my hips and knees really started aching. By the time we were at the check out I was bent over with the pain in the small of my back, it didn't help that we had to stand there for ages. By the time we dropped mum off and I got home I was so shaky and dizzy and my head was so cloudy. I made tea for Thomas and lay down beside him. I think that was around 4.... So that was me until this afternoon around 2. I was in bed, couldn't do anything. Well before I got too bad I made myself a bacon butty and I wish I hadn't. I have been trying to have nothing with gluten in it but I had nothing else in the house. I wish I had just had the bacon. My stomach was in turmoil all through the night as well. I have to say I am really seeing the effects of gluten in my body. It really is a massive difference. So it has reassured me I am doing the right thing going off gluten.
Anyway I sat watching How I met your Mother on my Ipad last night and then before midnight I turned it off and I actually slept. I wish I could say, though, that my sleep was restful. It never is. Especially not when I am in a bad way pain wise. I have really bad nightmares. Crazy wacko nightmares. I was a vampire and we were getting hunted by people was one of them. In another I was in hiding for something. All of them had something to do with people being after me. I know there is a meaning behind it. Like no matter what I do my illness is always there wanting to take me down. I dunno lol. I think too much sometimes lol.
Every part of me aches. My fingers hurt typing but I have to push through and try and stay out of bed. I don't want to end up in bed for days, which is what this illness wants. I am shaking too. Do you guys get the shakes a lot? My neck hurts. I really need to get one of those rests for a laptop that the screen is higher and you can still type, because looking down at it is stretching my neck and shoulder muscles and causing an obscene amount of pain. So I guess I should go and sign off now.
I will check back in tomorrow and let you guys know how I am. I am going to post a video for my fibro episode showing the effects of being out and about. Really think it would be good rather than just talking about it here.
Anyway, how are you guys? How is your pain levels?
Lots of love and hugs to you.
Lynds, xxxxxx
Friday 6 June 2014
Happy Friday Folks : Fibro fog talk
Hey my lovelies,
It is Friday night and I am sitting at the computer working on videos and my blogs. I have actually been so busy that I just realised I posted two videos today but didn't actually plan one for tomorrow. Hmmmm that wasn't a good idea.
Anyway thats not what this blog is about. I am feeling really down today illness wise. I had to cancel my friend for the second day in a row because I was just so sore I couldn't get out of bed so there was no way I would be able to have her over :-( I just get so sick and tired of having to cancel plans and not get to see people.
My body is really weak today. I feel so achey. Proper flu like pain. I remember over the years all those times I thought I had the flu when obviously it was this that was causing it. I don't know whether I am frustrated or relieved. It is so weird on the one hand I know now why all the things were happening to me and why I never got over things quickly, but also I fought for ten years to find out what was wrong and it was just my friend mentioning to me that my symptoms seemed like what she has. I dread to think what would be happening to me now if it hadn't been for that chance conversation. Thank goodness for Sue!!!
I really wanted to talk to you guys about what it is like for me to have fibro fog and how it affects my life.
Most of you reading this probably already know what fibro fog is but just in case you don't. Here is the snippet I read on a About.com website:
It is Friday night and I am sitting at the computer working on videos and my blogs. I have actually been so busy that I just realised I posted two videos today but didn't actually plan one for tomorrow. Hmmmm that wasn't a good idea.
Anyway thats not what this blog is about. I am feeling really down today illness wise. I had to cancel my friend for the second day in a row because I was just so sore I couldn't get out of bed so there was no way I would be able to have her over :-( I just get so sick and tired of having to cancel plans and not get to see people.
My body is really weak today. I feel so achey. Proper flu like pain. I remember over the years all those times I thought I had the flu when obviously it was this that was causing it. I don't know whether I am frustrated or relieved. It is so weird on the one hand I know now why all the things were happening to me and why I never got over things quickly, but also I fought for ten years to find out what was wrong and it was just my friend mentioning to me that my symptoms seemed like what she has. I dread to think what would be happening to me now if it hadn't been for that chance conversation. Thank goodness for Sue!!!
I really wanted to talk to you guys about what it is like for me to have fibro fog and how it affects my life.
Most of you reading this probably already know what fibro fog is but just in case you don't. Here is the snippet I read on a About.com website:
Brain fog (also called fibro fog or cognitive dysfunction) is one of the most common complaints of people with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS). For many, it can be severe and can have just as big an impact on their lives as pain or fatigue. In fact, some people say brain fog is more of a disability than their physical symptoms.
So for me I find that I so often forget words, simple things that I have been saying from I started talking, but its like they are on the tip of my tongue but I just cannot get them out. It is a real struggle to keep up with conversations when there is more than one person talking to me. I find it so hard to concentrate on each person, its worse when they talk over each other or but in. Though the worst is when people interrupt me mid sentence because by the time I get back around to talking 9 times out of 10 I have forgotten what I was going to say. If it isn't about forgetting words I mix words up, like I would say dalking the wog, or something along those lines. I try to laugh it off mostly, but I have to say that it really really gets to me, especially when I am talking to people in a professional manner. I feel so stupid stumbling over words or forgetting what I am saying. I stop talking half way through sentences without even realising, or say something then repeat myself few minutes later not realising I have already said it.
The biggest issue for me is forgetfulness, if I don't write something down, do not expect me to remember, because within a few minutes I have basically forgotten what we were talking about or even that we talked. No joking this week I totally forgot I had been talking to someone only a few hours after. It drives me insane. I get so angry and frustrated with myself that I just cry sometimes. It is so hard for me, because although I have always had that little ditziness about me, I used to be able to talk better. I worked in offices, I took meetings, I worked in a call centre, talking was my job and I could've sold ice to an eskimo back then. Nowadays I struggle so hard to get control of what I am talking about. It takes me so much time to edit my videos because of the amount I have to edit out because I have basically rambled and repeated the same things repeatedly or said things wrong or forgotten things. It drives me crazy.
People don't get how hard something as simple as that is to live with. I have people who think it is ok to laugh at me. To make fun of me for it. That hurts me as well. It makes me feel so small. Even though they think they are doing the right thing by trying to make light of it, it doesn't work that way. Don't get me wrong compared to how I was last year with the added effects of medication I am in a different league. I am hoping that I will get better than I am now. I won't hold my breath but ho hum, there are worse things to live with I know, but that doesn't help how I feel.
Anyway, I think thats enough rambling for today. I hope this has made sense and has been helpful. Let me know in the comments section, what is the hardest thing about Fibro fog for you?
Love you all so much,
Lynds, xxxxxx
Thursday 5 June 2014
Me a neglecter of blogs... sorrrrry
Hey my lovely warriors,
I am terrible at this blogging lark!! I really need to get my finger out and do it more. I haven't even vlogged for ages, which I am ashamed about. I need to just pick up that camera and get talking. It isn't anything against filming. I have just go so busy with my main channel and editing and 'working' etc that I haven't been able to. I say 'working' because well its not like I am making any money lol. It is really a hobby for me lol.
Anyway how am I today, well apart from the elephant that has taken up residence on my neck and shoulders I probably would feel so much better. I had to cancel my lovely friend coming over because the pain is so unbearable. I had to go back and lie down for a while, it feels a little easier than first thing but it isn't going away anytime soon. I just get so fed up of feeling like this and the fact that planning my life is so dang hard because from day to day I just don't know how I am going to be feeling. I hate it. I know you all know what I mean. It just sucks so much when you have to let people down, or you miss out on seeing your friends because you can't make meet ups or get to see them. I have some friends that right now I am missing so much, and I know I am not seeing them because I cannot get to them to spend time with them. It hurts so much to lose out on friendships because I cannot guarantee my health. I don't know how much time I have spent crying over not being independent anymore.
Guys all my life I have walked everywhere, from early childhood I went walking for miles. My grandmother lives in the countryside and we used to stay there all the time and we would get up in the morning and walk and walk and walk. We would venture through fields and lanes and I loved it. Then there was the caravan, I would head one direction or another and just walk for miles and see where it took me. From a young age I would walk with my mother from the caravan to the shop over a mile away and then back, a mile doesn't seem like much now but then it was, but that shaped me for the future. As I grew up I just kept on with the walking. I would walk to work and back. Sometimes work places were an hours walk away, but that didn't stop me, I loved it. It was so refreshing. By the time I would get to work I would be ready for a day of work, whereas getting a bus left me warm, groggy and feeling sick. So anyway you get the idea. I always relied on my two feet to get me from A to B. Then as I got older my health got worse and worse and all of a sudden I had to rely on other people to take me to places. No longer could I just throw my keys and phone in my pocket and walk to my mums, or my friends or to the shopping centre. I had to plan my every move and make sure I had lifts to and from. I had my walking stick. I had to make sure I only did it on certain days so that if something else was happening that week I didn't wreck myself. It got to the point that I was seeing so much of my father in law because he was free during the day and took me everywhere I needed to go. I would pick up the phone and just ask could he help me out and he drop whatever he was doing and come to help me. We got so close that I began to call him Dad. He really was more of a dad than a father in law. Anyway I can't go into that more as the tears are tripping me already. Lets just say I miss him so much it wrecks me.
Anyway I really don't remember what I was talking about or where my point was going, but I just hate that I cannot do everything I want to do. I feel bad that I have to cancel on people or can't do the things I used to. I miss my old life everyday. I miss being able to afford the things that I had the ability to do and buy when I had a job and not have to sell stuff off just to buy new products or wait for birthdays etc.
Hmmm I didn't plan a woe is me blog today lol. But hey I wanted this blog to be what its like to live like this, so I guess this is how it has to be. No point in me leaving the dark out when this is how crap I feel today.
I get really lonely, which is why I started my youtube channel, it really gave me an outlet a way to talk to people and share my loves with people even when I physically couldn't get to see friends. I am very blessed to have a husband who is so supportive and looks after me and for Lynne who has dedicated so much of her time to being there for me. She is such a wee gem, I always feel bad asking her to do things, because I never want her to feel like I am taking advantage of her or have her feel like I take her for granted. I don't know what I would do without her, because for the most part if it wasn't for her being able to come and see me so much it would just be me here on my own. Thats the joy of being 30 most people have grown up and have their own lives and families, and everyone drifts and lives move on. I always feel guilty for that because for so long I was able to be that friend who was able to get out and go places, even through pain.
Never did I ever expect that the pain and fatigue would become like this. I used to think I knew what pain was lol. Now that pain that I knew is me on a good day. Anyway I won't go on anymore. You will all stop reading my blog if I whinge anymore. Hopefully tomorrow will be a much happier blog lol. But for today I wanted to just share how low I am feeling.
Sending you all love and hugs, and hoping your week is going well and your not in too much pain.
Loooooooves,
Lynds. xxxxxxxxx
I am terrible at this blogging lark!! I really need to get my finger out and do it more. I haven't even vlogged for ages, which I am ashamed about. I need to just pick up that camera and get talking. It isn't anything against filming. I have just go so busy with my main channel and editing and 'working' etc that I haven't been able to. I say 'working' because well its not like I am making any money lol. It is really a hobby for me lol.
Anyway how am I today, well apart from the elephant that has taken up residence on my neck and shoulders I probably would feel so much better. I had to cancel my lovely friend coming over because the pain is so unbearable. I had to go back and lie down for a while, it feels a little easier than first thing but it isn't going away anytime soon. I just get so fed up of feeling like this and the fact that planning my life is so dang hard because from day to day I just don't know how I am going to be feeling. I hate it. I know you all know what I mean. It just sucks so much when you have to let people down, or you miss out on seeing your friends because you can't make meet ups or get to see them. I have some friends that right now I am missing so much, and I know I am not seeing them because I cannot get to them to spend time with them. It hurts so much to lose out on friendships because I cannot guarantee my health. I don't know how much time I have spent crying over not being independent anymore.
Guys all my life I have walked everywhere, from early childhood I went walking for miles. My grandmother lives in the countryside and we used to stay there all the time and we would get up in the morning and walk and walk and walk. We would venture through fields and lanes and I loved it. Then there was the caravan, I would head one direction or another and just walk for miles and see where it took me. From a young age I would walk with my mother from the caravan to the shop over a mile away and then back, a mile doesn't seem like much now but then it was, but that shaped me for the future. As I grew up I just kept on with the walking. I would walk to work and back. Sometimes work places were an hours walk away, but that didn't stop me, I loved it. It was so refreshing. By the time I would get to work I would be ready for a day of work, whereas getting a bus left me warm, groggy and feeling sick. So anyway you get the idea. I always relied on my two feet to get me from A to B. Then as I got older my health got worse and worse and all of a sudden I had to rely on other people to take me to places. No longer could I just throw my keys and phone in my pocket and walk to my mums, or my friends or to the shopping centre. I had to plan my every move and make sure I had lifts to and from. I had my walking stick. I had to make sure I only did it on certain days so that if something else was happening that week I didn't wreck myself. It got to the point that I was seeing so much of my father in law because he was free during the day and took me everywhere I needed to go. I would pick up the phone and just ask could he help me out and he drop whatever he was doing and come to help me. We got so close that I began to call him Dad. He really was more of a dad than a father in law. Anyway I can't go into that more as the tears are tripping me already. Lets just say I miss him so much it wrecks me.
Anyway I really don't remember what I was talking about or where my point was going, but I just hate that I cannot do everything I want to do. I feel bad that I have to cancel on people or can't do the things I used to. I miss my old life everyday. I miss being able to afford the things that I had the ability to do and buy when I had a job and not have to sell stuff off just to buy new products or wait for birthdays etc.
Hmmm I didn't plan a woe is me blog today lol. But hey I wanted this blog to be what its like to live like this, so I guess this is how it has to be. No point in me leaving the dark out when this is how crap I feel today.
I get really lonely, which is why I started my youtube channel, it really gave me an outlet a way to talk to people and share my loves with people even when I physically couldn't get to see friends. I am very blessed to have a husband who is so supportive and looks after me and for Lynne who has dedicated so much of her time to being there for me. She is such a wee gem, I always feel bad asking her to do things, because I never want her to feel like I am taking advantage of her or have her feel like I take her for granted. I don't know what I would do without her, because for the most part if it wasn't for her being able to come and see me so much it would just be me here on my own. Thats the joy of being 30 most people have grown up and have their own lives and families, and everyone drifts and lives move on. I always feel guilty for that because for so long I was able to be that friend who was able to get out and go places, even through pain.
Never did I ever expect that the pain and fatigue would become like this. I used to think I knew what pain was lol. Now that pain that I knew is me on a good day. Anyway I won't go on anymore. You will all stop reading my blog if I whinge anymore. Hopefully tomorrow will be a much happier blog lol. But for today I wanted to just share how low I am feeling.
Sending you all love and hugs, and hoping your week is going well and your not in too much pain.
Loooooooves,
Lynds. xxxxxxxxx
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