Elf on the shelf

Reporting for duty.

Firstly I shall start by explaining what elf on the shelf is for those of you who don't know. On the 1st of December Santa sends an elf or elves as is in our case to come and keep an eye on the children in your house. They report back to Santa on Christmas Eve when he returns to collect them and hopefully drop off the children's presents.

Our Elves are Elfis and Ella SnowBottom. Names inspired by myself. My girls love the names- the word bottom in there is a great hit! They are returning home to the North Pole tonight and both my girls and I are very sad about this. We have loved having them to stay and will look forward to Dec 1st 2013 when they will arrive again.

I should mention that the elves come alive at night and get up to mischief. These elves are far to naughty to work in Santa's workshop, but love coming to live at children's houses to entertain them with their tricks. It's better to show you their tricks rather than try to explain.....

                        
 

                       

                                   

                  

                           

                           

                           

                                       

                          

                       

                                   

                                          

                                          

                         

                                   

                       

                                      

                                     

                                

                           

                          

                          

                                    

                                             

                                      

                            

                           
                           

                           

                           

                           

                           

                                        

                                         

Bye bye elves see you next year!!!! We will miss you!!!

Gangsta Wrapper.

Paper Paper Everywhere....

Tonight I HAVE to get the last of the Christmas wrapping finished. I am sick to death of wrapping and feel like I have turned into some sort of Gangsta Wrapper the amount I have wrapped. I mean why are children's things suck odd awkward shapes to wrap! My thought on this is that it's so you use more wrapping paper. It wouldn't be so bad if when it actually came out of the box it was that size but it's normally fully of stupid packaging and those tie things that take you forever to get off on Christmas morning!

                               

Doing too much. 

It's that time of year when as a parent you are pushed to breaking point going at 100mph trying to get everything ready in time. For a fibro sufferer this only means one thing... danger flare ahead!
I didn't get much sleep last night and haven't been sleeping well again as of late so I was awake from 12am.

The morning started well, I made a jelly with Evie my youngest got our baths and hair washed and we were all set to go. We got to town and went to the bookshop to collect a book that I had reserved, and the computer said I had already paid so who was I to argue and I walked out the book shop with my free book. So far so good.

Evie decided she wanted to go to pizza hut for lunch so I thought it would be nice. I enjoyed my lovely lasagne whilst Evie munched her pizza. I started feeling very tired and dizzy, sick and faint. I took Evie to the toilet and had just enough notice to warn her what was about to happen. BAM next thing I know I am on the toilet floor and Evie is holding my hand. 2 lovely ladies we're asking if I was ok. Cue me turning as red as Santa's coat.

                                   

I don't know if it was that I didn't get much sleep, pushing myself or the fact that I am due for another B12 jab soon. When my iron goes low I have a fainting problem. I think it was a mixture of both. I rang my mum and sat in pizza hut waiting for her to get there ( luckily she was in town anyway). I then came home and slept. 7 hours solid - I must have needed it!

Better get on....

So as I get back to the last of the wrapping and go and pop some more pills for my aching body I will leave you with the following it aptly describes how it is. The shampooing bit especially!

Welcome to my world!

What does Fibromyalgia feel like?

Fibromyalgia is a very tricky, elusive disease. It comes and goes in cycles, attacking different places in your body without any seeming pattern or sense to it. One day you’re feeling pretty good, and the next day you’re feeling so dreadful you can hardly hold a coherent thought together, much less be productive and cheerful at your work.

I read a great description of Fibromyalgia as feeling “flu-like.” Think back to the last time you were “coming down with something.” It’s that day before you start showing the obvious symptoms of sneezing, coughing and fever. On that day before, you just feel so generally “blah,” but you don’t know why. Your voice sounds fine. You’re not sneezing. You don’t have a fever. You just feel so tired, and achey, and awful all over. (The medical term for this is ‘malaise.’) You feel so poorly it is difficult to concentrate at work. Heck, it’s difficult to concentrate enough just to drive to work, and you feel totally spaced while driving. You feel so awful you just want the day to be over so you can go to bed, and hope that tomorrow will be a better day.

That’s Fibromyalgia. Sometimes the next day is better. Sometimes it’s the same thing all over again. And, sometimes, despairingly, it’s even worse.

Think back again to that pre-flu day, and how difficult it is to do the most ordinary things—like just getting out of bed.

The day goes something like this… Your alarm goes off, and you’re still so tired you can’t believe it’s morning already and you’re actually expected to move. You’d give just about anything to sink back into your mattress and not move all day. You hit snooze so many times, adrenaline finally kicks in a bit, screaming: “Now you’re running late! GET UP!!!” You depend upon that adrenaline to help you get out of bed, and stumble to the shower. You can’t believe how much it hurts just to walk those few steps. You look longingly back at your bed. “Don’t even think about it!” screams your adrenaline, pushing you toward the shower again.

You don’t want to strip out of your pajamas. You feel chilled and stiff all over. Getting naked and soaking wet seems so very unappealing at the moment. You run the shower, getting it as hot as you can stand, and hoping the steam will warm the bathroom up a bit. You begin to peel of your pajamas, wondering at how much it hurts just to lift your arms over your head, and how stiff you feel as you bend down to remove your bottoms.

Finally, you step into the shower. “Get moving! You’re late! You’re late!” screams your adrenaline again.

The water feels overly hot, but you still feel cold all over. You reach for the shampoo, but it hurts to raise your arms over your head. You decide to just stand there for a while before trying to shampoo your hair, hoping the hot water will ease your still, aching muscles up a bit. You close your eyes, and almost fall asleep again right there in the shower.

“Up! Up! Up!” yells the adrenaline again, “This is no time for a leisurely shower! Get washing!”

You reluctantly reach for the shampoo bottle again, bracing for the pain of lifting your arms over your head to wash your hair. It’s painful and uncomfortable, but you grit your teeth and get the job done. You reach for the soap to wash your body. You can wash your mid-boy OK, as that doesn't involve much bending or reaching, but you dread reaching down to wash your legs and feet.

You consider skipping this step, thinking maybe the shampoo suds dripping down off your head will count as a full-body wash.

“Don’t be gross. Just wash! Late! We’re late!” screams your adrenaline.

You reluctantly bend to wash your legs and feet, amazed the amount of pain this causes in your spine and leg muscles. Just the act of bending over makes you suddenly dizzy, and you grab onto the walls of the shower to remain standing. You try to ignore the dizziness as you wash, dreading the head rush you’ll get as you straighten up again.

The head rush hits. Swarms of black dots swim in front of your eyes. You put both hands out to brace yourself on the sides of the shower, until things steady again.

You've done it. You've finished your shower. Now, only 16 hours to go and then you can go back to bed again…

Now, imagine this going for ten, twenty or thirty years.

And, all through this time, you look like “the picture of health.” Your cheeks are rosy. You certainly don’t “look sick.”

You make an appointment with your doctor. Surely feeling this poorly can’t be normal? (And, surely this is fixable!)

Your doctor checks you over. Every blood test comes back as perfectly normal. Once again, you appear to be “the picture of health.”

“Just stress. Try to relax,” says the doctor, “Get some exercise. That will increase your energy level.”

Exercise?! Just getting out of bed this morning seemed like a triathlon event. And, this crazy man wants me to exercise?! It’s a miracle I was even able to get dressed and make it to this doctor’s appointment—this appointment where I hoped I’d get some answers…

Welcome to the world of Fibromyalgia.

You wonder yourself—how could you look so normal on the outside, and have nothing show up on any of the doctor’s tests, yet feel so abnormal on the inside?

Surely, the doctor must have missed something! So, you make an appointment with another doctor. And, then another. Perhaps some doctor along the way begins to prescribe some drugs for you. Some anti-depressants that make you feel even more tired, and make you put on weight. And, you weren't depressed to begin with. The only thing bumming you out was how awful you were feeling everyday…

And, now you’re stressing out because you’re falling behind at work, and the house is a mess, and your spouse is getting frustrated since you’re irritable all the time, and just don’t seem to be “snapping out of this thing” or getting better. And, you never feel like having sex anymore because you’re always so tired, and achey feeling, and just want to sleep in your bed, not doing anything energetic in it…

And, when your friends call, you make excuses not to go out, until finally they stop calling…

But, maddeningly, this “illness” seems to come and go without pattern or warning. There are some days where you feel almost normal again. So, you think you’re “getting better.” Or, that latest pill (or homeopathic treatment you’ve tried is actually working, and you’ve found “it.” The right treatment! The answer to this puzzling mystery. You’re getting better now! You’re overjoyed, and tell everyone of this wonder cure you’ve figured out that improved your energy and dispelled your malaise.

You’re thrilled that things are somewhat ‘normal’ again, and throw yourself back into your work, trying to catch up on everything you’d fallen behind on. And, you throw yourself back into your housework, trying to get all caught up there, too, doing massive piles of laundry, and cleaning everything in sight. And, you call your friends again, and invite them all over, to make it up to them for blowing them off before. And, everything seems OK. Your wonder pill seems to be working and everything seems like it’s going to be OK…

Then, it hits again. You wake up one morning, and once again feel like you’re getting sucked into the mattress. It is so very, very hard to get up again. And, when your bare feet first touch the floor, the bottoms of your feet feel so tender and painful. Like someone was whacking at them with a baseball while you were sleeping.

“Oh no, not again,” you despair, wondering what type of doctor you should see this time. What is causing this?! And, who should you see? A podiatrist for your aching feet? A chiropractor for your aching back? An internist for your irritable bowels? A general practioner for your overwhelming fatigue? Or, maybe a therapist? I mean, how can you look like the “picture of health,” and feel so bloody dreadful!

(You begin to hate that phrase “picture of health.”)

You begin to doubt your own sanity. And, you feel angry at the doctors for not being able to give you a diagnosis, or provide any answers that make sense.

“It’s not stress!” you think angrily. “The only thing stressful in my life is how awful I feel, and all the problems that causes!”

And, now your house is half-torn apart from your cleaning rampage, and you have all those friends coming over for dinner, and you just took on an extra project at work to make up for the stuff you’d half-heartedly completed before. How are you ever going to do all that when you can barely manage shampooing your hair?!

Welcome to the world of Fibromyalgia. Perhaps one of the most elusive and maddening diseases on the planet.

AUTHOR UNKNOWN

She's making a list she's checking it twice!

Be prepared.

Today I went to the benefits advice centre for a meeting with one of the workers to get help to finally complete my DLA form. I had to make a list of things to go on the form including medications etc. Doing the preparation beforehand was tiring but it was worth it as it made things easier even though I had to go with a list as long as my arm. One thing I found when we we're doing the form was just how much I do struggle at times when it is broken down. The lady who helped me complete my form was very understanding, and I just hope now that my claim doesn't take too long to process and I get a favourable outcome. I know I could really do with the extra money that it brings.

                       

More appointments.

I have also had another doctors appointment. I have such a great GP and I had a good chat whilst at my appointment and I never feel rushed. I have now changed one of my fibro meds and moved onto a newer version of it called pregablin I just hope this helps. My vitamin D levels we're low again and I am back on high strength tablets to help bring that up. He also went through my latest rheumatologist's letter and it seems I have now been discharged, would have been nice if the rheumy told me herself at the appointment.

                                           

Evie has also had her appointment at CAMHS (children and adolescent mental health service). We didn't have enough time so we have an appointment to go back in January.  I am not sure how to take this meeting as we were going through her life and things that could be impacting on her. I really don't want them to try and pin it all on my health as there are children who experience a lot more and are fine. They did stress though again that she is highly intelligent. I suppose this is something we will have to wait and see with.

Ups and Downs.
I have been feeling quite jolly getting into the festive cheer and excitement of Christmas. I have been busy wrapping and trying to get everything ready. I have my last few bits to wrap later then I am done. phew!

The downs for me have come in the form of a couple of falls. I don't know if I have been overdoing it or that my B12 levels are getting low again. I am due for another B12 jab in a few weeks so I am hoping that is just it.


                                           

Christmas Lists.
Whilst the girls have made endless lists for Santa and others have long wish lists I just hope that I have a flare free Christmas.

                                 

Thought I would end on a little song......

                                 

Hibernation.

Peek a boo!
It's been quite a while since I posted last. I really suffer with the fibro over the winter and I almost hibernate due to the affect the cold has on me. I have also recently spent some time in hospital having my appendix out, kidney infection and burst ovarian cyst. It all seems to come at once! This in turn has affected the fibro and knocked me for six.

The past few weeks I have also been trying to fit in school plays/ assemblies, appointments and trying to get organised for Christmas. I have to say my youngest Evie was a fab angel and sang her little heart out and my eldest Lillie played beautifully in her guitar assembly! They made me one proud mummy!

The weeks all of a sudden seem to have flown by and there is just over a week left! Thank goodness for internet shopping. I can shop in the warm, at a time I choose which is normally the middle of the night when I can't sleep and not have to worry about hurting myself carrying any heavy bags home. God bless the internet!

                                                 

Lack of pacing.
So it seems I am not pacing myself properly. I have fallen behind with what I needed to get done and then tried to play catch up and cram it all in. It hasn't worked. However, I don't want to not do things with my children so sometimes it's the price you have to pay. This weekend we enjoyed a trip to see Santa and also a trip to Narnia to see the snow queen. The girls really loved it. I didn't enjoy queuing for over an hour just to get on the sleigh ride to see santa. We also have been out for a meal with my mum which was nice for the 4 of us to all go out together.

Our Trip to Narnia!

The sleigh ride we took on the way to Santa's house.

Santa!

As much as the above activities tired me out it was worth it to spend some time with my children and seeing them enjoy the magic of this time of year! When your not well you have to try and do these things when you can with the children which is why I tend to end up over doing it then. However, at least when I have over done it at least they are back at school so I can rest!


                         

Clearing out the bad.

My last post was short and brief mainly as I was angry and upset over things that we're posted on my facebook wall by my so called friends. As with many Fibro sufferers we face judgement from all angles even those who we 'think' are friends. Whilst it was very upset and hurtful at the time, people making out like Fibro is nothing and that you make stuff up I am now past it. I have had a friends clear out and got rid of negative people like that. I don't need that in my life, I was in hospital and I should be able to comment freely on my own status about how I am so I can update friends and family. It did however, show me who my real friends were!

Sadly I am not the only person I know that this has happened to. I am sick of seeing people tell people to do a 'little voluntary work', 'get out more', 'make more of an effort' and the worst of all 'it's all in your head'. If you can't say anything comforting it's better not to say anything at all!


                                 


'Tis the season to be Jolly....'

This is sometimes easier said than done. A lot of Fibro sufferers are worse in the winter and I am one of them. I have been feeling a bit down but I don't think this has helped with everything that I have had going on. I also am waiting for my doctors appointment as yet again I have low vitamin D levels despite being on a high dose of vitamin D. I also am changing my meds to try and help with the pain and tiredness. As with all things trying new fibro meds is a lottery what works for one may not work for another. I can but give it a go. I have been suffering lately with my Endometriosis and Adenomyosis and so hopefully I can get either referred to gyne clinic or some better meds for that too.

I have however turned a corner and am now fully into the Christmas swing of things. We have recently had a photo shoot which I loved and had some fab pictures of the girls and that helped to cheer me up! I have been busy wrapping presents which has seemed like an endless task. I wish i could remember how much I hate wrapping when I buy all this stuff! To be fair I have done most of it now but I am waiting for more deliveries to come.

It's the dreaded food shop that's the worst and that I have to do in the next few days. I was going to go tomorrow but my leg is playing up at the min so unless I take my mum for help and go on the granny mobile (supermarket electric wheelchairs) then I can't go tomorrow. Whilst it is great fun going on it and helps me enormously I hate the looks I get whilst I am in it. I think people think I am messing about in them seeing as I am only 29! I feel self concious in them, especially if I see someone from the school.

Some of our photo shoot pics....

       

                                                   

       

                             

    

                                         

                          

                          

One thing that never changes.

Throughout it all there is one thing that never changes and that is how much I love my girls. They are my world and they make me so proud of them. They cope remarkably well with me and my health and for that I am thankful. They can also be very helpful. My eldest will often comment on my limitations and my disability not in a nasty way but in an understanding and mature way. I just hope I make them proud!

Internet Hate

Hurtful words.

This past week I was rushed into hospital and I had my appendix removed and they found that my pelvis was full of blood probably from another ruptured ovarian cyst. I also went in with a bladder infection and it developed into a kidney infection due to my renal problems and complications.

I made a facebook status update on my health and I was very upset to find this was hijacked and my children were brought into this. I am so upset about this and the fact that I couldn't delete posts until I had to discharge myself from the hospital due to it all. I made the post to inform friends and family know how I was instead of having to inform people with the same message over and over again.

I haven't got the energy to write anymore tonight as I am too upset and poorly. Hopefully my next post will be a more happy post and not an attack on a disabled person with FIBRO!