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Coping methods. I should have called this section "Survival Strategies".
I have to cope with the limitations I am under due to my pelvic pain. I do take medication to help control this pain, but there are still things that I must avoid to keep it at a manageable level. No lifting, reaching, stretching. No movement that will stretch or stress the pelvic area. Unfortunately, this also means no excessive walking or exercising. I avoid stairs. I don't drive a vehicle. There are days that I have serious problems walking - either the pain levels are simply too high or my legs don't want to support me or co-operate. On those days, I do resort to using a wheel chair for mobility.
First of all, I have set simple daily goals for myself - if I can get out of bed and make it up, wash, dress, do my hair, put on my makeup and get to the sofa, then anything else I accomplish that day is gravy. I know this seems over-simplified, and there are days that I need assistance to manage even that much, but these simple goals are usually attainable. Basically, I'm operating my life on the KISS principle - Keep It Simple, Silly. Paying attention to my appearance not only makes me feel that I have actually done something, it also makes me "easier on the eyes", so that my family isn't seeing me in my pyjamas all the time. It is also a good way to combat depression - if you look good, you feel better.
I do keep a journal. I make notes throughout the day of how I slept, how I feel, what I did, what effect that had on pain levels, where it hurts, what type of pain, etc. I have found this much easier to do since I started journalling the pain associated with fibro, as I found a printable "weekly pain chart" in PDF format on the FM-CFS Canada website, a site I have placed a link to in the "My Favorite Links" section of this site. By tracking what effect my activities have on the pain levels, I know what I have to avoid if I have something planned that cannot be rescheduled. Using a pain scale from 1 to 10 also helps not only to keep the pain in perspective, but also to communicate the effect the pain has on you to your doctor or medical team. There are several good pain scales available on-line, but basically 1 is no pain at all, while 10 is the worst pain you can recall experiencing. Journalling and keeping a pain chart also helps to communicate to those around you how your illness affects your activity levels and vice-versa, giving them a clearer picture of why you have to cancel plans at the last minute.
A song from my teenage years keeps coming back to haunt me - one line said something to the effect of "Communcation is the problem to be answered", and with chronic invisible illness, this is still one of the problems we have to deal with. Because invisible illnesses such as fibromyalgia and adhesions do not show up on any tests, and we generally look perfectly healthy both to the naked eye and to most tests and diagnostics, we must find a way to communicate how we are feeling to our medical team, our loved ones, our friends. Personally, because I don't want to feel like a burden to my family, I tend to wear a mask to hide exactly how I feel. I am slowly learning to remove the mask, but it is difficult. I've always been an independent person, even to the point of doing my own renovations and house and car repairs, and I am now in a position where I have to depend on my partner to do the vacuuming, sweeping, scrubbing, driving, and some days to assist me in my personal hygiene routine. The "Letter to Normals" that has been posted on the Fibrohugs website is an excellent tool to try to help people to understand the restrictions we must live with as chronic pain patients.
I do wear comfortable clothing, usually in layers. Clothing that is tight and restrictive in the tummy area aggravates the pelvic pain, and drafts aggravate the fibro pain. I have also noticed lately that the legging-style pants I had found so comfy on the tummy are actually making my legs hurt, so I am trying to find an alternative that I can live with. Skirts and dresses as an alternative to pants, elastic or drawstring waist lines as opposed to waistbands with buttons, and bare legs instead of pantihose or ankle socks instead of knee socks all help with the comfort level. Since I deal with cold hands and feet most of the time, I always wear socks (usually wool), and moccasin-style slippers or a sturdy lace-up style oxford, and I generally keep a sweater close at hand.
I have come to realize that there are times when I simply MUST lie down, due to the pain in my back, buttocks, and legs caused by sitting up right, even with my lower legs supported by a footstool nearly the same height as my chair. I don't lie down necessarily to nap, but simply to change position. Travelling is very difficult for me because sitting in one position and wearing seat belts puts pressure in the wrong places. For testing or specialists, I must travel an hour and a half to three hours, and I find that a short break every hour or so does help, but a three-hour drive usually requires an over-night stay or a couple of days of complete rest after our return home. Some vehicles are simply too uncomfortable for me to travel in, and we have actually traded vehicles three times in the past couple of years because of this.
Sleeping is another area that requires comfort. We have a solid foam mattress on our bed, which actually is very comfortable, but in the past year or so, I had started to feel like I was trying to sleep on a bed of nails. I found a good buy on a feather mattress topper, and this was one of the best investments I have made. I no longer feel the tender spots after a full night's sleep, but there are still nights when it is easier for me to sleep on the sofa alone than it is to try to sleep with my partner.
Sitting is a challenge for me. I cannot sit on a hard chair for any length of time without suffering pain, burning, or "pins and needles" and numbness in my buttocks, even with my feet elevated. I carry a small soft cushion with me most of the time, and have even used a pillow when travelling to try to avoid this problem.
Constant pain and the loss of mobility and ability that goes along with it often causes depression. The best treatment for depression is laughter - laugh long, hard, and often. Depression can also be combatted by a mild anti-depressant, but to try to avoid taking yet another medication, I use simpler methods, such as relaxation and distraction techniques, getting outside or sitting in a sunny window as often as possible, and looking my best even for spending a day at home.
Chronic illnesses also affect our ability to interact with other people, effectively isolating us. I have only four people that call me on the phone regularly, a dramatic change from the dozens of people I used to interact with daily when I was working, and we very seldom have friends or neighbors drop in for a cup of coffee and a chat. One method that I use to cope with this isolation is chatting on-line and support groups. I feel very close to the people I have met through our common illnesses, and communicate with most of them on a regular basis, either through chat, through a message board, or through e-mail.
Exercise for me is a no-no, as it aggravates the pelvic problem. I do enjoy getting outside, winter or summer. I live in the "Great White North", and we own skidoos. At least twice a winter, we go on a planned excursion - no more than 20 miles, at a leisurely pace. It doesn't give me a great deal of exercise, but it does get me out in the fresh air, and it does exercise my upper body. It also allows me to feel like I am participating in my family's social life to some extent, and because I am operating my own sled, I can control the speed and comfort of the ride by avoiding the bumps and jars or by taking them at a slower pace. In the warmer weather, I spend a good deal of time outside working in my flower beds, my vegetable garden, or my berry patch. On my better days, I also take responsibility for the lawns with our riding mower.
Taking an active role in my family's life is often difficult. Plans get made for "some day" and then carried out spontaneously when I happen to be having a good day. If we are invited out somewhere, I know that I have to schedule my activities for two or three days before so that I can be fairly positive that the day of the event will be a "good" day, with tolerable pain levels. I used to love to go dancing, but that is no longer possible. We do go out for New Years' Eve, but I restrict myself to one or two slow dances, and instead simply sit back and enjoy the music as long as possible.
I do participate in family activities when I am able to do so. Watching a good movie, going fishing, skidooing, or on a picnic are still enjoyable on good days. Skating, swimming, hiking are not "do-able" activities for me.
Intimacy can be a point of contention for any couple touched by chronic pain or illness, and each couple must find their own "comfort zone" on this issue. Physical closeness can still be an enjoyable and important part of your relationship, even if actual intimacy is not possible. Talking is a necessity - tell your partner how you feel, what he/she means to you, and share other things in place of what you are no longer able to enjoy. Cuddling, touching, and hugging can still play an important role in maintaining the closeness you shared and in expressing the emotions that you still feel for your partner.
Most importantly, work with your medical professionals. Be an active participant in your treatment by journalling and communicating with your medical team. Report to your primary care how your treatment is working or not working, and don't be afraid to speak up if you feel that you are not managing well on the therapy or treatment that has been suggested. Always be open to suggestions, and make an effort to follow your doctor's recommendations. If it doesn't work well for you, talk to the doctor and try to find an alternative. Even when you feel that a suggested test or therapy will not be a benefit, give it a try. A test that comes back with a negative or normal result has served a purpose by ruling out that particular cause for the symptoms you are dealing with.
Educate yourself on your illness, on suggested therapies, on prescribed medications, even on diagnostic tests so that you know what to expect. I was recently sent for a bone scan, and I had no idea what to expect either during the test or what it might show. I went on-line and researched it, so that when I went for the test, I knew what they were going to do, what problems I might run into, and what a "normal" bone scan would mean. No matter what medication I am prescribed, I always look it up so that I am aware of what side effects or adverse reations I might experience. By knowing what I am facing, there is nothing left to be scared of.
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