Not so positive today...

Hi Everyone!

I have been thinking about writing something positive for a change and not just complaining about the pain. Seems like my life is pretty much consumed with pain though. I just can't think of anything really positive to write about. Fibromyalgia is a very negative subject for me.

I have read quite a lot of blogs and it seems like I'm sort of in the same situation as most of the other fibro sufferers. That is the people who has full blown fibro of-course. Seems like there is a difference. There are some people that say their fibro is under control without medication etc. Is that possible? I have tried it both ways. With meds and without meds. Exercising and massage etc. The whole caboodle! Even stuff like acupuncture. So far nothing has worked for me. I'm still looking for the right thing. As a matter of fact, over the last two years it has just gotten worse.

I am sick of trying everything that's on the market. All the supposedly miracle cures for fibro etc. As far a I know, there is no cure for fibromyalgia. This I'm pretty sure about. If there was a cure we would have all known about it. There's only stuff for the symptoms and that only works for some people with fibro. My personal opinion is that those things help for people with some signs of fibro and not the ones with full blown fibro. Maybe they had some deficiency and taking supplements has helped for it and hence the miraculous recovery! There are many deficiencies that can present as fibro symptoms. So when I hear people are cured, and not using anything but positive thinking and a couple of vitamins I'm very skeptical. If I could cure myself by positive thinking I would have been better by now.

I have always loved doing things for myself and loved being independent etc. I have hopes and dreams and so many things I still want to do in life. I definitely did not choose to feel this sick all the time. I would do almost anything to just feel better. Even if it was just for a couple of days a month. To be pain free for one day would be a miracle!

I love it when I read some medical journals and they say that fibromyalgia is no mystery and that, with the right guidance, you can live a normal life. Now, in my opinion a normal life would be getting up rested in the morning, going to work, managing your house, children, house work etc, cooking, feeling good, going places, having friends over, going to movies, visiting places. Also sleeping through the night, and have I mentioned living this life absolutely pain-free! Oh yeah! Sure, bring it on! If I could live just half a normal life it would be so great! Please cure me! Fibromyalgia is a mystery otherwise we would all be cured by now!

I know some people would probably not agree with me, but this is just my opinion and just me writing what I'm feeling!

Thanks for reading!

Hanging in there!

Hi Everyone!

I have been away for quite a while! It's funny how life can just sort of take over and before you know it 10days have past. That's how long it's been since my last post. Whenever I thought of writing on my blog I was either too tired or not home.

I've been busy with my 10yr old's birthday party. Lots of planning and baking! It's been raining not-stop for the past week and we had to have the party inside. The Pirate Party turned out a great success and I'm super glad all the birthdays for the year is over!

Since my children were little I have always made their cakes myself. No ordering from someone. They now expect me to make their cakes and also whatever they ask for. They have so much faith in me. So far all my cakes have been pretty ok. The kids have loved it and when they're happy I'm happy! But over the last year it has not been as much fun making them as it used to be. The fibro has taken my joy out of making cakes. The hours of standing upright and bend over is like torture. I am still sore and stiff since Thursday after making the cake. I do it with love though for my kids! When I see the joy on their faces the pain just doesn't matter anymore!

Now to get back on to the fibro subject. I have been taking a supplement for the last 12 days. So far there has been no change. Everyone is telling me that it takes long for any natural thing to help and that I'm too impatient. Yes, I am impatient. Anyone with so much pain would also be desperate and impatient to have some relieve. I have been taking a receptozine (an anti-histamine) together with my sleeping pill at night. It helps me to sleep, but makes me feel very groggy the next day. I don't take it in the week because I have to be up at 6am and get the kids ready for school and drive etc. So when it comes to weekend I take it and try to stay in bed as much as possible and get the sleep I so desperately need. It helps to keep me asleep, but I have not one morning gotten up that I feel refreshed and ready to go! It is like I'm not getting the right type of sleep.

I have also been taking painkillers at least once a day. I don't take the same ones everyday. I try to alternate so I don't get used to just one. Sometimes it helps for a couple of hours and at least I get things done. The one painkiller - tramahexal - works pretty well for about 4hours, it actually gives me a kick, and then I have a terrible come-down of it. I would suddenly feel extremely irritable and can't handle any noise and stuff like that. At least I know now what does it so I handle it better! I have found that now that I'm of the Lyrica and trepeline, I have much more control over myself. I know for a fact now that the Lyrica didn't help for me. I know now, when I take something, exactly what it does to my body and whether it works.

I will try to blog more regularly again! Thanks for reading!

I hate my disease!

Hi Everyone!

I survived the week. I'm so tired I could just go sleep right now! If only..! I slept through last night. Miracles do happen occasionally. Wish I could have just slept the whole day. I have started doing my pilates again and think I have been so tired that eventually my body just gave in. Even though I slept through the night I just don't feel better. I actually feel like I only slept a little. Think it will only really be effective if I slept through for about a week or so. And what's the chances of that happening?

I received the supplements I ordered yesterday and started taking it. It is, for lack of a better word, disgusting! It's a powder that you have to mix with water and drink it. They describe it as a refreshing energy drink that tastes so good that even kids would love it! Oh my, my kids won't touch it. I know I have to drink it to see whether it works or not, but I don't know if I could use it for the rest of my life! Will have to figure out a way to make it more appetizing. Maybe mix it with a fruit smoothie or something.

So, this is the start of me trying different supplements. Let's hope it leads to something good. At the moment I'm so tired of medication. And so tired of this debilitating disease! Wish I could get of the pain medication, but so far it has not been an option. I can only handle so much pain! Hoping that doing pilates will help a bit with it.

As you can see I'm moaning a bit and sound a bit depressed. Well, this illness can really get one down in the dumps. I sometimes think, how can it be possible for one person to feel so sick and in pain? Here I sit with it all and I am struggling to believe it. I think people that don't have fibro have no idea what it is really like. It is impossible to describe to someone else. That is why we all have to stick together and encourage one another to stay strong! It does make me feel better when I read other people's blogs and they know how I feel. At least I'm not alone!

Thanks everyone for blogging and making me feel better!

In full swing!

Hi Everyone!

The kids are back at school and everything is back in full swing again. Especially my fibro! The driving and little sleep has got me in bed again! Think the fact that it's cold and raining is not helping either.

Holiday time is better for me. I don't have to drive so much and also don't have to get up so early. I have ordered a supplement that I will hopefully have on Thursday. I'm sure I have a shortage of something. Maybe it will help for that. Now I have to just tell myself everyday to pace myself and not overdo it. That is so difficult to do with four kids in school. Just have to keep my chin up and move forward!

I have experienced the funniest thing. About 4 weeks ago I got bitten by a mosquito in two spots. It made really big red marks that stayed for about two weeks. Then it turned into bruises which I still have! Don't know what to think of it? Should I be worried? Maybe its just my funny body that's not working the way it should.

Happy blogging and thanks for reading!

The Pain!

Hi Everyone!

I think of all my aches and pains my headaches and lower back pain has been the worst. This morning I woke up from the pain in my back. It feels like someone stuck a knife in there and is slowly turning it to make me suffer. I find that for some of the pain in my body, like my neck, legs and arms, I can do some stretches that helps a bit. I just haven't found any stretch for my lower back. I can't even touch it. If anyone knows something I can do for that please let me know. Other than pain killers, which I took already!

Enough of that! I am trying to stay positive! I finally had some results with the enzyme therapy. My blood tests came back and it was pretty much normal. There were some things that were a bit low and they say I must take this certain supplement. Think I will try it just for the sake of trying something. I am off most of my meds. I only take my sleeping pill at the moment and obviously some pain meds when I can't take it anymore. So I guess a supplement might be a good thing. If this one doesn't do anything for me, I have a couple of other supplements I'm looking into! I will definitely do updates on the results! Pity it takes months with the natural stuff to really see results. This will definitely be a long journey for me. These are all natural stuff and it can't do me harm to try!

The other very good thing I did for myself is I bought myself a memory foam pillow! Wow, this stuff is amazing! It is really so comfortable! Now I will be saving to get the mattress cover too! It is such a pity that it is so expensive! The pillow alone is a huge improvement though and I would encourage everyone with fibromyalgia to get one!

Thanks for reading!

Stages of Fibromyalgia!

Hi Everyone!

So, I have made peace with the fact that I have fibromyalgia and that I have to live with it. It was not an easy thing to do though. In a lot of ways it was a bit like dealing with death. Like losing someone. You go through the stages. You go through the stages of losing what you used to be to what you have become.

First denial. "It can't be", "I'm too young and healthy" etc. "There must be something else wrong with me". Something that is curable. Something that will go away. This stage took very long for me. Even though I was diagnosed, I was very skeptical and just didn't want to except the fact that I had a disease that was not going to go away.

Then anger. "Why me?" "It's not fair". "I don't deserve this" etc. Anger at everyone for not listening or understanding or believing you. Anger at yourself for not being able to think it away! Anger at doctors that don't believe you are in pain. Anger at everyone in general.

Bargaining. If only I did something to prevent it or "what if I go to another doctor?" or maybe if I do good things and treat people well God could make me better etc. Thinking that if you eat healthy food and exercise it will all go away.

Depression. When all else fails. This illness can really make you depressed. Especially after you have tried everything possible to make yourself better and it all failed. How are you going to cope? How are you ever going to get up and feel good if you know that nothing will ever be the same again? Depression is a difficult one to deal with. I have cried many, many days!

Then there is acceptance. It is not easy to accept that you are ill, that there are so many things you won't be able to do. That you have lost your ability to multitask, be super mom or woman etc. That there is no going back! This really is the hardest of all in my opinion. You might think that acceptance means giving up. I don't think so. I feel like I have reached a point where I have accepted it but I haven't given up. Giving up will make my life useless. Acceptance is to know you are ill, that there are no cure yet, or at least none I know off, that you know there are limits to what you can physically do.

I still have hope and dreams for the future. I have just accepted that I will have to do it all differently and in my own time and when I feel up to it!

In a way it has given me peace. It has freed me, in a way, to just be myself one day at a time.

I now live each day at a time without putting to much pressure on myself. It has made me a happier person. I'm still in pain and very tired, but at least I know why!

This is my personal viewpoint that has help me understand my illness. Hope it can help you too!

Thanks for reading!

Just another day in the life of...

Hi Everyone!

I'm so happy to finally be on the fibro bloggers directory! Thanks Good!

I had my blood tests done on Monday and is still waiting for the results. They said it would take till next week. I'm sooooo impatient when it comes to thing's like that. Will keep everyone updated!

I had the most awesome experience today! I lay on a bed with memory foam. Wow! It's the nicest, softest, most comfortable thing I have felt in a long time. I first just looked at a pillow, and then I happened to walk past a shop that also sells the beds and a loose piece that you can put on any ordinary bed. Oh, how good it would be for my aching body! Not for my wallet though! If I had the money I would definitely have bought it on the spot. No can do, will just dream about it. I really think it would be great for people with fibro. It molds to your body and is soft but firm.

People with fibro tend to be very sensitive to touch and noise and heat and cold. This will definitely make one's sleeping more comfortable. Think I should start saving!

I have also decided to go of some of the medication I'm on. The Lyrica and Trepeline. I find that it does nothing for my pain, headaches and tiredness. All it has done for me over the last year or so, was to make me put on more and more weight and have less and less memory. Now I'm overweight, in pain, sleep deprived and can't remember anything! I'm going to go of and see if I'm worse of without it. Who knows, maybe I can rather save the medication money to buy the memory foam. Maybe I will also get my own memory back too!

So there! A day in the life of someone with fibromyalgia.

Thanks for reading and happy blogging!

Weekend bliss!

Hi everyone!

It was my birthday on Saturday and I decided to really chill this year. No big party with lots of people and lots of work. No way I could do that in the state I'm in! So on Friday I went for coffee with my girl friends, where I didn't have to bake or make the coffee or clean dishes. I could just enjoy!

The best part though came Friday afternoon when we went camping at a very quiet and peaceful place. I was so spoiled the entire weekend. I didn't even wash dishes once. We just sat and relaxed and ate and played with the kids!

We had so much fun, wish we could have stayed longer, but alas, the kids have school and we have obligation to attend to. It was such a good thing to be away from all the hussle and bussle at home and in the city. So stress free!

I have decided to try something new for my fibromyalgia. I'm having a special bloodtest done this week where they check which enzymes your body doesn't produce. They then give you a special supplement made specifically for you. I am going to try this as I thought that I really have nothing to loose. None of the conventional medicines are working for me. I will keep everyone updated on the treatment and obviously also the results!

Who knows? Maybe it will help. Or maybe not! We will see!

Thanks for reading!
ositive!

Is there hope?

Hi Everyone!

I got up yesterday morning feeling a little better and with some energy to do a couple of things. It didn't last though. By 2pm I was so tired. It's almost as if something just suddenly sucked the life out of me! I thought the bit of energy was great and that I can just ignore the pain for a while. Unfortunately that theory went down the drain.

I'm almost scared to feel good, or at least to say I feel good. I could get up feeling well and the next moment I'm flat on my back! Think I would rather not say anything at all. If you tell people you feel good in the morning they sort of expect you to feel the same way by the afternoon or even the next day. That's the way it is supposed to be with 'normal' people. Even though I would like to see myself as a very 'normal' person, and someone who can do anything, I have to come to the conclusion that I am 'normal' no more...

Yes, I said it. There is nothing 'normal' about me anymore. I had to make peace with the fact that I can't do what I used to do. The problem is that there are so many can't do's and so little can do's. I have no more control over the way I feel physically. It sucks! It sucks in a big way! I just hate being out of control. Where I used to tell my body what to do, now my body tells me what to do! That alone freaks me out!

Having an invisible illness is really so difficult. I don't think that the 'normal' people can really understand what it is like to have fibromyalgia. I sometimes don't understand it myself. How can I possibly feel so ill but look so well? (Other than the major black rings under my eyes!) Surely there must be something, some test, that can prove to everyone how I feel! I know I sound a bit silly, but if I had something on the outside that could tell people who I see exactly how I feel and what I have, it would really help.

It really is a pity that fibromyalgia is such an unknown disease! At the moment I am losing hope. Know I shouldn't, but I just don't know what to do anymore. The medication I'm taking is not working and everyone is telling me things like: if you take this supplement you will definitely feel better, then the next one comes with their miracle cure for tiredness. Now I don't know what to do. I can't try everything as I don't have the money. If I don't try it then I might miss out on something that could make me feel better. In the back of my mind my head is telling me that there is no cure, because if there was then all of us writing these blogs, looking for answers, would have known about it!

I will keep looking for answers as I'm not ready at this stage to give up completely. Surely someone will find a cure, and help us all. Until then I will hang on to the little bit of life in me and give in to my body's demands!

Happy blogging!

Sleep! Where are you?

Hi Everyone!

Lying awake most of the night all I could think of was sleep. I cannot remember when last I have actually had a full night's sleep. No, I lie, I can remember only one night a couple of weeks ago that I slept through the night. The reason I remember it is because it was such a big thing for me. I was telling everyone that I finally had a good night's rest! But alas, it didn't last...

I love coffee, and thought ok, this is now the last resort for me, I am going to quit caffeine completely. I already have only been drinking coffee in the morning and only rooibos tea (which is caffeine free) from the afternoon to evening. I haven't had any coffee except for decaf for about ten days now. It has changed nothing! Just another thing that didn't work.

The biggest thing is that the problem doesn't lie with falling asleep as much as it lies with staying asleep. I take a sleeping tablet to fall asleep that works just fine. I go to sleep about 10pm-10:30pm and wakes up between 1:30am-2am. That's the only "good" sleep I have in a night. From there on it's very light sleeping and constantly waking up. It doesn't matter what I do, I just can't get a good night's rest!

I'm sure this is a problem that most people with fibro struggle with. The only advice the medical doctors give us when we go to them is to keep a clean sleep routine, don't drink any caffeine, don't do this, don't do that. Well let me tell you, none of that has worked for me! That is because that all helps only for you to fall asleep, not keep you asleep for 8-10hours a night! Heck, I'd be happy with six!

I feel that if I could get something that could give me that wonderful restorative good night's rest I would definitely feel better. Not sleeping well means our bodies don't recover properly and we feel like we didn't sleep at all. Sleep plays an important role in restoring our bodies through the night so we can get through the day. No wonder we can't get through the day. It's because all our resources are depleted! And on top of having that we also have to deal with all the pain!

I would love to hear from other people with fibro whether or not they have found sleep!

Thanks for reading!