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Make sure the pathway from bed to bath is well-lit.
Place an easy to operate lamp beside the bed. There are touch-activated lamps. There are noise activated lamps and electrical outlet adaptors (clap-on, clap-off). There are push on lamps that can be mounted to nearly any surface by adhesive or hardware.
Keep a flashlight beside your bed within easy reach should you need it.
Make sure the bed is not too high to navigate easily. If it is, then a step stool may be required. The average bed is 22 inches high.
Rather than purchasing an expensive mattress, it can be helpful to purchase toppers that can make a basic, firm mattress more comfortable, such as memory foam, down mattress covers, etc. Toppers and mattress covers can be found at most retail stores.
Cuddle ewe.com (toppers made especially for patients with chronic pain such as fibromyalgia).
Do not crawl onto the bed on hands and knees. It is better to approach it like you would a chair. Back up until you feel it behind your legs. Sit down then roll onto your side, bringing the knees up. Then adjust your position.
You may wish to raise the head of the bed utilizing wooden bed risers to support the bed posts or legs or an inflatable mattress wedge that fits between the mattress and box springs. It should be lifted no more than 6 to 8 inches.
Satin/sateen or high thread count cotton sheets make it easier to roll over in bed. Flannel and cotton jersey sheets and heavy blankets make it harder to move around.
Body pillows can help support head, neck, legs, hips, and arms.
The spasms associated with stiff-person syndrome are generally alleviated by sleep.
If your symptoms progress to the point where you cannot sleep comfortably, discuss this with your physician. Do not experiment with over the counter sleep aids. Many of them are GABAergic and could compound the effects of or interfere with your medications.
Many night-time pain relief plus sleep aids include diphenhydramine (Benadryl) which could lead to a fast heart rate or excitability rather than sleep. Consult with your physician before you take medications containing diphenhydramine in combination with your prescriptions.
Excessive daytime sleepiness can occur with treatments for stiff-person syndrome. There are some tricks you can try to reduce it. Establish a consistent wake-sleep routine. Get up at the same time every morning. Using an alarm clock helps you maintain a schedule. Set an alarm to limit your afternoon nap.
Try to get adequate exposure to light during the day and limit blue light from electronics and television prior to bedtime. Blue light stimulates the pineal gland to halt the production of melatonin and start the production of serotonin. Sunlight stimulates your body’s morning spike in cortisol levels.
Daylight lamps can help during the months when daylight is limited. Indoor light may not be enough.
Consider replacing the bulbs in your light fixtures with "daylight" mimicking bulbs.
When you feel drowsy during the day, try getting up and moving around the house or your place of employment.
Perform as much physical activity as possible within your limitations during the day, but avoid strenuous exercise 3-4 hours prior to bedtime. Reduce the amount of stimulants such as caffeine.
If you experience excessive daytime sleepiness you should not be operating a motor vehicle or heavy equipment at work. Stimulant medications can be prescribed, such as Provigil and Ritalin, but carry their own set of side effects.
If you (or your partner) experience frequently wakefulness, trips to the restroom, restless limb movement, sleep apnea, snoring, nightmares, thrashing, etc., you may wish to consider separate beds or even bedrooms. This is not a sign that you no longer care for one another, but a medical necessity. Sleep deprivation can be debilitating and your caregiver will need their rest to help care for you.
Depression, physical limitations, loss of self-esteem, limited libido due to medications, and the strain of dealing with a chronic illness can lead to strain on a relationship, especially the intimate aspects. It is possible to overcome these obstacles and maintain intimacy.
The situation can cause significant emotional crisis. It is important to maintain (or repair) the aspects of intimacy beyond the sexual act itself: being polite to one another, expressing feelings of love and gratitude daily, celebrating that you still have time together, and expressing your continued desire for one another.
Non-sexual touch (holding hands, hugging, kissing) as well as laughing and relaxing together can be crucial to keeping the balance sheet of your relationship on the positive side. Don’t let your relationship be reduced to that of patient and nurse, or worse, that of parent and child.
Healthy dialogue about how you feel and how your partner feels, your worries, doubts, and fears can help you both overcome them. They may be afraid to touch you. They may assume if you don’t feel well, you aren’t interested. You may have good days and bad days. Unless you communicate, they have no way of knowing what you want and need.
Stiff-person patients who experience spasms with light touch need to be handled carefully. Tickling is not enjoyable. Approaching them from behind without warning can cause them to stiffen, perhaps fall. Lightly touching them without warning can cause spasms. While the intent may be romantic, the outcome is the opposite.
Visualizing yourself as “broken” or “damaged” can be fatal to your relationship with yourself and your partner. You may have physical manifestations of a disease, but that does not mean you are no longer lovable or desirable. You are still the same person you were before the diagnosis. You are still deserving of love and capable of giving love.
Daily positive affirmations can help you maintain (or shore up) your self-image. It is easy to feel anger over what you’ve lost, but it is important to focus on what you are still able to give and receive.
Don’t be afraid to communicate what you require of your partner. You cannot expect them to “intuit” your wishes. Do so in a calm, loving tone. Tell them how much you appreciate them and how much you long to stay connected, but be firm and clear in what you can and cannot tolerate physically. Make sure you are redirecting the action, not rejecting the person.
It is best to say, “I love you and want you, but _____ is uncomfortable. Let’s try _____.”
You may need to explore new positions that accommodate your physical limitations. You may need to time encounters for when your medications are working their best. It may limit spontaneity but increase your ability to enjoy the time together.
Properly prescribed medications can improve function and reduce symptoms of illness and may promote positive leisure and healthy sexual experiences. If you experience physical dysfunction, talk to your health care provider. There may be other treatment options that can help.