I admit it. I’ve been reduced to eating what I can reach some days. If you get up & A) forget what you got up for, B) Get interrupted & asked for something else..and then C) find out your energy is gone after you do so and D) Sit back down…you likely have Lupus.
Let’s see- what can I reach from my bed-throne? Coffee from this morning. Warm. At least it’s not cold. Yet. Old pop, peanuts in the shell (I choked on one last night) so no, a can of pringles….it’s not looking good. There’s no sandwich, not old, not fresh, not EVER.
What is it that’s so hard about making someone a sandwich anyway? Two pieces of bread and some meat and cheese slapped in the middle. Heck- I don’t even need pesky condiments on it-that would take a real workhouse to figure out. I’ll settle for just the basics. But nooooooooo. There’s no sandwich in reach, there’s never a sandwich and noone is going to make me one. Not now. It seems, not ever.
That’s what having Lupus is like. You never know from one minute to the other when it will be too difficult to get up and make a sandwich..your body is tired from fighting itself…it’s fighting off something every day, every minute, big and small, and it’s draining. Sandwich draining. Stupid Lupus.
Are they thinking I’m a queen or princess wanting to be waited on-“Bring her majesty a sandwich right now”, or “Her majesty desires a sandwich”…& that they have been reduced to peasants of royalty, constantly being put upon to serve? Over a sandwich? Really? It’s that hard to slap those pieces of bread on either side of meat and cheese?
So they have said, “let her eat old chips and old pop and warm coffee” in their defiance of me and my lupus. Is that fair? What’s a Lupus Princess to do? So I wrote this “decree” –
New Discoveries for Princesses With Lupus
1. Thou shall let others go out alone- What that really means is it’s a lot easier to care for your royal self if your only getting and taking care of your royal self and the peasants are not around.
2. Thou shall criticize others to take excellent care of themselves or else. Why, you ask? Easy. How can you expect them to take awesome care of the royal Lupus Princess if they are not healthy.
3. Last on the decree. Thou shall buy only lunchmeat, cheese and bread from the grocery store. This insures that a sandwich can be made and only a sandwich can be made.
Lupus is alot like that. It is unpredictable, One minute you feel fine, the next a nerve gets trapped, a rash begins, nausea comes on, heads ache, ears fill with fluid, digits swell or some form of inflammation causes symptoms below the surface- connective tissue is the padding that keeps the human body together. When it is attacked, these symptoms come on immediately..it’s not like a cold that starts with a runny nose..or a flu that starts with a queasy stomach. Lupus has no middle, no beginning and no end.
And that is what makes us Princesses (and Princes). So take out your bells, find yourself new decrees and make this life with Lupus work for YOU. JJ
As a caregiver, how do I handle the unpredictability of lupus?
The following is from Lupus.Org (The Lupus Foundation of America)
Lupus is a disease of flare and remission, meaning that disease may be active one day and quiet the next. Usually flares last more than a day, and usually an increase in medication dose, or a change of medication, will be necessary to suppress the symptoms.
Due to the unpredictable nature of lupus you may need to adjust your responsibilities and priorities at times. Neither you nor your loved one with lupus should feel guilty about these disruptions to activities that you cannot control, but it is important to find strategies to cope.
In order to prepare for unpredictability it is important to build a contingency plan in addition to communication, smart planning, and strong disease management skills.
- Understand and accept the unpredictable nature of lupus.
- Explain lupus to your support system of family, friends, and co-workers so they are aware how this can translate into changes in plans and daily activities.
- Provide your support system with educational materials and trustworthy websites on lupus; these efforts will allow them to understand the disease and how they can help.
- Get to know the point of contact for each physician who treats your loved one for lupus and any related health complications. This will help you keep in regular touch with them and will help in case of an emergency.
- Be sure your support system knows about changes in your loved one’s health status, perhaps through a website or email thread, so that you can efficiently update everyone.
- Schedule home delivery of groceries to ensure there is food in the house when you cannot make it to the store.
- Arrange for medications and other supplies to be delivered from the pharmacy so that no prescriptions lapse, and your loved one always has the necessary supplies without you having to go get them.
- Have a babysitter or house-sitter on call to look after children and household responsibilities in case of an emergency.
- Establish a carpool group to make sure younger family members can continue to participate in their regular activities.
- Educate yourself about the disease to better understand what situations or triggers have led to a flare in the past.
- If you are employed at an office job, try to bring home important documents you are working on, and if possible, arrange for remote access to your work computer system. This will allow you to stay connected in case your loved one with lupus needs you to stay home with them or needs to be taken to an unexpected appointment.
- Help your loved one to keep a list of current medications, laboratory test results, physician contacts, and emergency numbers. See the article on Emergency Preparedness for specific tips and suggestions.
- Encourage your loved one, based on their age and health status, to engage in proper self-care and disease management skills. This can mean better awareness of their lupus and a more effective tracking of symptoms in times of flare.