Just a quick note to let you all know that we are having some trouble with our broadband connection so I may be absent for a few days till things get sorted out Thanks for all your kind messages, I really appreciate them {{{HUGS}}} to all xx

…elbow that is Yes, I now have tennis elbow in my right arm I’d been having the odd twinge for about a week but it got worse overnight so, after finally getting a doctors appointment for all my other things I thought I’d ask if he knew what was up with my elbow too. In his words…

Having walked at a snails pace and with two walking sticks / crutches for over 2 and a half years now tennis is something I could probably only manage on a games console these days!

Rest is the best ‘medicine’ but is pretty impossible for me as I need both of my arms to get around! So it’s a tubigrip to help support my elbow for the forseeable future, and, fingers crossed this tennis ‘match’ won’t last very long!

Just a short post to let MBF know I am thinking of him, these days will never get easier…just different {{{HUGS}}} XxX

The appointment went really well and I could be having surgery in as little as 3 weeks! As I have trouble remembering things here is a list of what the surgeon and I went through…

• I will need a bone graft, normally done from the hip but due to the problems with my knees he doesn’t want to make things any worse on that leg so the graft will come from the shin in my left leg.
• The bone will then be placed over (or in?) the break in my foot and attached with screws.
• The operation has around a 70% success rate
• I’ll be staying in hospital for about 3 days…or until I can ‘hop’ around on crutches he said!
• I will be back into the ‘boot’ for 6 weeks, non weight bearing and it will take around 3 months before he can tell whether it has been a success or not
• If it doesn’t work then there is nothing more he can do and I will basically be left how I am now (so in theory no worse off than before the op). 2 walking sticks and the slow lane for me forever…lets hope not!
• As I have had a blood clot before and am now more prone to them due to other medical conditions, I will be on heparin (blood thinning) injections for the 6 weeks after the operation and may have to go on warfarin for a further 3 months but won’t know that till the boot comes off

So, for now we are staying positive and hope that this will work. However, the surgeon has made it clear that this will not have a dramatic effect on my current very slow walking pace…I think most people are used to me now though

In just over an hour and a half I will be seeing  the surgeon about the operation I require on my foot. I am both anxious and excited…please, if you get chance, keep me in your thoughts and prayers…

I’ll update my blog with any news when I return

Not new years resolutions but things I intend to keep going through 2008…

1. Learn how to ’scrapbook’ properly!

2. Create a scrapbook for each of the ‘trips’ I go on

3. Take a picture of me, MBF and Oscar each time we meet up

4. Persuade Oscar to sit still long enough for me to take a photo of him at least once a week

5. Stop putting off all those things I say I’ll do tomorrow!

OK, so its not the most original list, but, it’s an important one. The more I read about Lupus from those fighting it, those who treat it and the wider ‘community’ that it can effect the more I feel that I should document ‘life’…actually, my life. Not because I think everyone needs to know about me, infact it’s not that at all. There are two reasons.

The first is that my memory isn’t what it used to be and I want to have the happy times documented somewhere so that I can look at them whenever I want and be reminded of some of the things that I may have forgotten!

The second is…well…just because we never know what’s going to happen…

Anyway, enough from me before this turns into a teary, feeling sorry for myself post Hope you all have a good weekend {{HUGS}}

I’ve got that sinking feeling Today has gone from bad to worse so this is just a short post to say if my health continues to worsen I may not be around very much. I’ll post as often as I can and will hopefully still get to take a picture a week, even if it is of the doctors waiting room! {{{HUGS}}} to all

What’s going on?! I woke up at 4.30am and felt like I had had a full nights sleep! I decided to get up and try to get somethings done that I’ve been struggling to do during the day. I think this sleep situation has got to the stage where I need to go and see my doctor. As I said a couple of days ago, there is no treatment for fatigue and many Lupus websites advise that it’s part of life and it’s just a matter of working out how to deal with it.

I just can’t see how I can get my jobs done and have a life when I am needing so much sleep! Yesterday I said to MBF that I didn’t know how I was going to enjoy my holidays this year if I was sleeping nearly 20 hours a day, he said “but 4 hours of fun “. His reply is just one of the reasons we get on so well. I am not very good at seeing the positives and it’s great to have someone there to point them out to me every now and again Even if I have to spend most of my days sleeping I will still have chance to get a few photos on all of our holidays, just a matter of managing my time as well as I can.

Maybe ‘working’ for an hour and then resting for an hour through the day might work? That’s something I might try tomorrow

Anyway enough of my fatigue ramblings! I am off to write a little bit more of my Lanzarote travel diary Hopefully it’ll appear here soon Have a good Tuesday

Yes, it’s another rose shot! Last one this week I promise I’m hoping the colours aren’t too bad in this one? I’m not too happy about the noise in the centre of the flower…thing I need to check the ISO on my camera!

Woke up early this morning so feeling very tired already Going to try and do a few bits and pieces from my to do list and then I’ll try and get some rest. Hope you all have a good day

Suffered by 90% of Lupus patients and with very little the doctors can do, this can be a real pain in the a$$ for anyone wishing to have a life as well as being a ‘Lupie’! (yes, thats really what those with Lupus call themselves!)

I have tried a few things the past 2 weeks but nothing seems to help. Today after 9 hours sleep I got up at 9am, had a shower, got dressed and was all ready to go to the shops with my Mum when I suddenly came over really tired. Within a matter of minutes I was struggling to keep my eyes open and had to go back to bed instead of going out I slept until almost 4pm, another day pretty much wasted I hope this is just a temporary ‘fatigue patch’ I’m going through as I have so many things I want to enjoy in the coming months, the last thing I want is to be falling asleep all the time on my holidays!!

It’s nearly my bedtime now, a few emails to reply to then I’ll try for a good nights rest and see if I can stay awake all day tomorrow! I’d really like to get some shots of Mum’s cats before Oscar arrives so if I manage to get them to sit still long enough I’ll be sure to post the results here

Goodnight all

We might only be 9 days into 2008 but so far it’s been pretty good to me! After the previous 2 and a half years I had settled on the fact that maybe I wasn’t meant to have good days, however, so far so good!

I am seeing the surgeon regarding the operation on my foot next week and will hopefully have the  operation I need sometime this month, great news seeing as I’ve been waiting well over 2 years for this!

Then little Oscar will be coming home which, as you have all seen, I can’t wait for!

Early this year I will be seeing one of the best Rheumatologists in the country at one of the leading Lupus centres in the world, St Thomas’ in London.

There will also be some great trips with MBF to some of our favourite places, these are the things that have kept me going and I look forward to even just our weekend visits. We were saying just the other day that it’s amazing 2 people worlds apart in so many ways have actually become the best of friends and together, in the almost 3 years we’ve known one another, we’ve been through more than most people do in a lifetime…plus the old fella has to put up with me and thats not easy…is it MBF?

Anyway, just a short post from me tonight, the fatigue has really got a hold off me at the moment and it seems no matter what I do I can’t shake it off so I’m heading to bed to train my brain on my nintendo and then hopefully I’ll get a good nights sleep

{{{HUGS}}} to all

The past few days have been terrible. I am tired all the time. This isn’t like me but it is something that could well be part of Lupus and something I need to learn to live with Whilst searching for ‘help’ on the Lupus forums/website I came across and article by a lady called Karyn Moran Holton. It was quite interesting so I thought I would share it with you all

Around this time of year, when just about everyone is gearing up for the holidays, the severe, debilitating fatigue that plagues most lupies becomes one of our biggest liabilities. Who wants to go shopping, decorate or wrap gifts when you feel like overcooked spaghetti and frequently choose napping over bathing or eating?

The fatigue that most of us feel on a daily basis isn’t your run of the mill “Gee, I should turn in a little early tonight” sort of tired. It’s more of a “Five whole feet to the bathroom? I guess I can hold it a little longer” tired. Getting enough rest isn’t just difficult, it’s impossible. I call it having a “sleep tapeworm” – No matter how much you get, it isn’t going where you need it to!

Add to your daily fatigue: Holiday dinners, school pageants, shopping for gifts, putting up decorations, cooking, cleaning, keeping up with Christmas cards, late-night parties….Geez, I’m exhausted just thinking about it!

Fatigue in lupus isn’t something that we can just ignore, or shake off. It’s a warning from our bodies, telling us that we cannot keep going at this pace, and that we need to recharge ourselves. Being in a constant state of inflammation is draining in the extreme, and sucks up a lot of our energy without us really realizing it. Additionally, we don’t always get the quality rest that we need at night because of various symptoms and problems of lupus — Restless leg syndrome, chronic joint pain, fever, Raynaud’s, the list goes on and on.

So what can we do (short of becoming hermits until January) to get past this busy, stressful time of year without falling asleep into the eggnog? Here are a few tips and hints that may help your fatigue become a little easier to manage.

• Sleep When You CanI remember getting this advice before I became a mom for the first time. I remember thinking “How ridiculous! I’m not going to change my schedule. The baby is just going to have to adapt to MY needs!” (You other moms can stop laughing any time now.) Just like a newborn, lupus doesn’t care if you haven’t slept in three days. It can’t be reasoned with, and is completely unpredictable. Don’t even try it. Simply learn to adapt your schedule. If that means that you take an hour nap right after the kids go off to school, but before your spouse’s office holiday lunch, so be it. Some days it may mean skipping your shower and just dusting with baby powder. Shoot, I’ve been known to catch 10 winks in my car while waiting to pick up my daughter from school! Sleep is precious – Don’t pass up any opportunity to recharge yourself, even if it’s only for a few moments.
• Eat RightGetting the right amount of nutrients in your diet can go a long way toward adding extra energy into your life. You know that your body needs food and water to function, so doesn’t it stand to reason that the better quality fuel you give it, the better quality energy it’s going to have? No one’s asking you to give up your nightly éclair, so don’t panic. Try adding a good multivitamin and 8 glasses of water daily to your regimen. If that doesn’t kill you, you can start adding things like more veggies and whole grains to your diet. Also, remember what you’ve always heard about breakfast: It’s the most important meal of the day for a reason! You need what a good breakfast can provide to get through your mornings and to set your energy levels for the day. Try it for a couple of weeks and see if I’m not right. (You know I am!)
• Get Some ExerciseNo, I’m not kidding. I can hear you now: “But Kaaaaryn! I don’t have any energy to staaaart with! How can I exercise?” The answer is simple – If you exercise, you get more energy. It doesn’t have to be some sort of sadistic step aerobics class, either. A gentle daily walk, or Tai Chi Chuan routine counts too! Yoga and water exercises are also good choices for lupies, with their gentle movements and go-at-your-own-pace options. Daily exercise not only makes us feel better about our bodies, it helps boost energy levels while we’re awake. Add to that the benefit of a better, deeper night’s sleep, and you’ll find that your fatigue is only a fraction of what it was when you were planted on the couch watching the “American Idol” finals. (Don’t even deny it. You know you watched!)
• Pacing, Pacing, Pacing!Yes, kids, it’s time once again for Karyn’s yearly lecture on pacing yourself! I can’t really say it enough: We have to learn when to say “When!” in order to reserve our energies for when we really need them. I’ve gone over plenty of short cuts for pacing in “Holiday Shortcuts” and “Pacing Ourselves” so please re-read those articles if you’ve temporarily been bitten by the “I’ve-Got-To-Do-Everything-Myself” Bug. Remember the basics: Store-bought is just as good, it’s OK to say “No” when you need to, and asking for help is not considered a mortal sin.

  Fatigue and the effects it can have on our sense of well-being are no joke. We need to do what we can in order to minimize the chunks of our lives that fatigue can devour. Keeping a little energy just for ourselves isn’t selfish, it’s a way to give a gift to our loved ones this season: The gift of a happier, more energetic and involved person who just happens to have lupus. (Not that it slows her down!)

Lupus is difficult to get your head around. For those who don’t know much about the disease please check out the links on the right of this post. It seems fatigue could well be a symptom that something else is going on with my body, maybe that is the case. Excercise for me is very difficult due to the difficulties I have with my legs, I am starting to go swimming at least once a week this year and hope that over time I can build this up. I am also hoping to have surgery in the next couple of months which will help with my walking.

Enough about Lupus! I have many things to look forward to in 2008 but the thing I can’t wait for the most is collecting Oscar, my new westie pup 25 days to go! His ‘family’ have said they will start calling him by his name which I am really happy about as hopefully he’ll get used to it by the time I collect him I am buying little bits for him all the time at the moment, next on my list are some little toys for him Roll on 2nd February!

It’s been a busy day here today and I am shattered so rather than write a post I’m going to go to bed and make up for this short post tomorrow! )

Hope you all have a good weekend )

OK, so it’s not the biggest snowfall I’ve ever seen but it was still nice to see snowflakes this morning It’s freezing cold here but I couldn’t resist opening the patio doors and taking a few ’snaps’ to share with you all

I also found a couple of photos from the weekend. MBF and I went the seaside on Saturday. It was pretty chilly, even in the sun, and the wind made it even worse but we had a nice time and the waves were fantastic! I couldn’t manage a walk on the beach so sat on the pier and watched MBF trying to avoid getting splashed!

I have so much to do at the moment. I have 3 notebooks with various lists in, the worst one has over 30 ‘To Do’ things on it! I must crack on and try and get some of these things done! More from me tomorrow

Sorry if some of you have read this already elsewhere but it’s too good not to share!

I have had a good day!

Firstly, I have been working on a project to put together an ‘information portal’ for people in the UK with Brain Tumours and their families, friends and caregivers. This has been a big ambition of mine for over a year now and today I received some great news! As well as placing this information on our own website we will now have a section on one of the USA’s largest websites that deals with all things Brain Tumour related. This is fantastic news as the information will now reach a much wider audience than I could ever have hoped for. If this wasn’t enough I have also received details of a major UK charity that is also willing to provide a section of their website for our project! FANTASTIC!

It was a very sad situation that led to me researching allsorts of things to do with brain tumours in 2006 and I’d like to think, as well as all the fundraising we have done in Rose’s memory, this little project is another way we will be able to honour her memory.

Secondly, I have just returned from a doctors appointment and I have some great news!! Next week I will (hopefully!) see the surgeon about the operation I require on my foot. If all goes according to plan I should be having the surgery within the next 2 or 3 weeks! Putting aside all the possible complications and ‘bad things’ connected with me having any kind of operation, this is BRILLIANT! I have struggled for over 2 and a half years now and to think my foot could soon have the metal it needs to start working properly again…well…it’s bloody great!

2008 is starting off pretty well, now I just hope everything goes to plan!

More from my world tomorrow and with a bit of luck I might have a few photos to share with you all too

Here’s hoping you all have a happy and healthy 2008!

For those taking part in a PAW through 2008 and for anyone else who might be interested I will be posting my PAW every Saturday

This is a rather short post but before I sign off I want to share this video with you. I have a passion for classical and opera music and as those who share my taste will tell you, Pavarotti was fantasic! This song and the video that goes with it has helped me smile through the last few tough months and I know it’ll get played by me a fair few times in 2008, enjoy…