Talj’s Blog

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!