COPING & PACING
It is very hard having to live with pain & fatigue day in day out, together with all the problems these conditions bring it causes a lot of emotional stress & depression, which can aggravate our symptoms & make us feel worse.
As with most chronic illnesses alike it can result in loss, be it work, friends, independence & social activities, all making avoiding depression impossible.
We try to cope the best we know how, but it can be very trying & there are days when it can become just too much to handle.
COPING is something we are just expected to know how to do, however it takes...
"SUPPORT, HARD WORK, PATIENCE & SKILL"
And only by trial and error can we find what strategies helps us best to cope and handle things more efficiently.
THINGS TO HELP YOU TO COPE
~CONTROL~The first step to coping with these illnesses is to understand that to take control of your illness, you must take control of your life. This means adapting and adjusting and prioritising. Sometimes we will simply be in denial about everything that is happening to us, and in order to attempt to try and change and adapt our lives to our disabilities we need to try to accept them first.
~REST~Take daytime naps and rest periods when needed because rest plays a vital role in conserving our energy! Rest does not have to be sleep, as there are many times that pain keeps us awake. So just try to slow your mind down and think peaceful, relaxing thoughts, lie down in a quiet comfortable place, preferrably in the dark, (an eye mask can help with this) shut your eyes and switch off from your surroundings. If your in a situation where its not possible to lie down, try to do so staying and sitting wherever you are, close your eyes and try your best to switch out the outside world, and breathe deeply as you clear your mind. For the times when tiredness and exhaustions overwhelms us and we just cannot stay awake, do not fight this, and do not look at this as giving in - listen to your body!
~PACING~ This is one of the most important and hardest things to do! Try to think of your body as a car, it will not run without gas/petrol, well that gas is your energy!
RUNNING ON EMPTY & NOT PACING YOURSELF causes crash and burn and relapse!
Learning to pace yourself is very difficult and often there are times when we naturally make the most of our ups but doing so makes our downs so much worse!
Things to remember when trying to pace:-
*Conserve Your energy - try to stick to the 50% plan & never use more than half of your energy
*Listen to your own body & when it says stop....STOP! or it will result in flares and possible relapses.
*Gradually Does it Try to plan ahead and dont do too much in one go.
*SAY "NO" Learn to say "no" Unless you tell people that you are not capable of joining in with an activity, We experience substantial pain; why add to it by enduring irritating people or activities? Reduce contact with individuals who drain you rather than add pleasure to your life. Reserve your precious energy for only the most important tasks. Prioritize. When possible, eliminate the "I should..." activities for the "I want to..." variety. It is often well worth paying someone to carry out strenuous chores, such as housecleaning and grocery shopping, to free ourselves for more fulfilling activities.
*Limit Yourself. When you can't "just say no," limit the time you spend on burdensome tasks. If you must attend a social or work-related engagement, plan to arrive late and leave early. It is likely you will have a better time, and in most cases, people will not notice.
*Always Be Prepared For activities we choose to engage in, there are ways to make them less stressful and more enjoyable. "Always be prepared". Fill your car or bag with creature comforts. Extra medication, heat packs, pillows, comfy clothing, slippers, earplugs and sunglasses can be real life savers. Once you determine for yourself what works, keep a checklist handy when you are preparing to go out. Think about the conditions of the place you are going: What is the temperature? Is there seating or steps? Are the chairs comfortable? How is the lighting? Call ahead to inquire about the environment and whether any special arrangements can be made.
~POSITIVE ATTITUDE~"Have a positive attitude." How many times have we heard that one? While our emotions can not cause our illnesses, they no doubt affect our symptoms. At times it is very trying to maintain good thoughts when we feel so bad, here is a few things to keep in mind.
1. Expect bumps! It is important to acknowledge that we will sometimes feel down. But by expecting rather than dreading down time, such periods become more tolerable. Try to say to ourselves, "I was depressed before, and got out of it; this time, too, it will pass." After accepting that we will sometimes feel sad, and even experience self pity, we can concentrate on ways to shorten these periods and make them fewer and farther between.
2. Track the changes. Keeping track of moods helps put ups and downs into perspective. Counting and measuring the duration of the bad times -- as well as the good ones -- can put them into perspective. This knowledge is empowering, because we can remind ourselves that a bad flare is, a temporary setback, and find ways to ride it out until our baseline returns.
3. Fun distractions. One of the cruelties of our condition is that when we need distractions most. For this reason it is important to compile a list of our favorite activities when we are feeling optimistic to be used when we most need them. When we are engrossed in a beautiful or funny movie, talking to a good friend on the phone, or listening to our favorite music while lying on a heating pad or in the shower/bathtub, we can trick our pain receptors into leaving us alone! Meanwhile improvements in spirit have an added impact on our entire well-being. Laughter is good medicine; while dwelling on our troubles tends to compound them.
4. Shape your perspective. Is the glass half empty or half full? We should try to look at the FULL part in the glass! And focus on the good things in our own lives (the things we all currently take for granted) and by trying to change our perspective it can literally, change how we view the world.
5. Create a new self. If we hang on tightly to the "old self" the finding of our "new self" becomes increasingly difficult. We should try to recognise that our expectations must shift and we must seek to find in our new bodies new ways to enjoy and exerience the things that we had done before, and even find brand new hobbies and activities that are more within our limitations.
6. Don't forget the good stuff. While the physical symptoms can be overwhelming, there are other parts of our life--our social relationships, passions, family -- that also exist and we should try to focus on these. By focusing on the positive aspects of our life, we become more aware of how many there are: the friends that stuck by us, the things we still enjoy, and the accomplishments we have been able to make, however small, under very different conditions. Because each task now represents a challenge, we should celebrate whatever we manage to accomplish. As we have been told many times, if we shorten the list and pace ourselves whatever we do eventually adds up to something to be very proud of.
7. "Oy, it could be worse" Many bad things happen in the world. the odds are that some of them will happen to us. Not because of anything that we have done, but because, as the saying goes, shit happens. It takes only a short view of the evening news to remind ourselves of the horrors occurring every day. So, this is what has happened to us. We too were caught. Let us examine what we have: (a) We know our condition is not terminal, so we need not begin contemplating our pending mortality. (b) As bad as we sometimes feel, our underlying condition is not going to get worse. We have already experienced the worst, and, to our credit, have gotten through it. (c) Although few people achieve permanent remission, many improve significantly. As we understand how our actions and emotions influence our general well-being, we can find ways to partake in more and more activities.
8. Keep hope alive! Keep hope in your heart! Cos basically as the saying goes....."Y Never Know" And as medical research increases, it is only a matter of time before better therapies (and perhaps even a cure!) are introduced.
9. Lean on me! A single most important predictor of how we do is the support network we create. We certainly appreciate what it means when someone helps us and trys to understand us! Try to be open with family members, while at the same time supportive of their needs. Put yourself in their shoes as often as possible! Also seek help outside of your immediate circle, there are now all sorts of support groups, both live and in virtual computer space.
10. Give Yourself A Break. Your body is already giving you a hard enough time, so dont be hard on yourself or punish yourself for things out of your control. Guilt can play havoc on the mind, try to keep focused on the fact that just because you cant do the things you used to - it doesnt mean you dont care!
~LOWER YOUR PRIDE~ Accept that sometimes needing things like walking sticks, bath-seats, extra handrails and wheelchairs is nothing to be ashamed of - these are just tools that can help you in your daily life. Don't be afraid to ask for help. The people around you care about you, and you don't have to stand alone. And remember the people that "Mind - Dont Matter" When requesting help we should take into account our relationship with the people, how familiar they are with our condition, and the length of time the interaction will take. On one extreme, we may decide to play the martyr -- to keep quiet and endure great pains so as not to create a scene or disrupt others. However, most people would prefer to make some sacrifices if it means saving you from several days of down time. Put yourself in their place: how would you feel if you could have prevented your friend from having to spend two days in bed recovering?
~SUPPORT~Not only does our illness/conditions affects us, it affects those around us too! Our familes & friends may find it hard to understand our condition and how we feel, and having their support is an essential, crutial coping tool.
The fact that it is an "invisible illness" can cause disbelief in those around us and cause us heartache and stress. And some of the social stigma's of these conditions influence people into believing it is "all in our heads" But it is most definately NOT! and there is increasing factual evidence to support this. However some of this scepticism stil exists in the medical proffession, and too often patients have to face this with their own GP & Speciaists & even our Family & Friends!
*Firstly try to educate yourselves as much as you can on what you have been diagnosed with. Doctors are reluctant to tell us & too often as we have a chronic condition they dont give us the time of day. The INTERENT is by far the best resource there are tons of informative WEBSITES and there are many BOOKS & LEAFLETS to read. If your stuck on where to find these resources you will find alot within this website and also a ton of links to useful info websites
*It can feel uncomfortable, upsetting & awkward telling people in person all about what you have and Information is much more easily absorbed by people if they read it for themselves, so HAND OUT / POST / EMAIL information you have gathered, direct people to websites you would like them to read. This especially works well with family & friends.
* Alot of people hand out or email LETTERS to their family & friends.These are written by a sufferer in the spirit of helping their loved ones understand, and are on a much more personal level. They include more about their symptoms and how they are directly affecting their lives.
To read my "LETTER TO OTHERS - CLICK HERE"
Your welcome to use it & print out for yourself or edit/modify it, or use mine to give your ideas to write your own.
*Get in touch & talk to others who have the same diagnosis, it helps alot to hear and see that you are "not the only one". You can chat online, in chat rooms and message boards/forums, and there are alot of support groups you can join, both online and within your local area. Your local support group will keep you upto date on all related events and research being done in your area. There are different types of support groups from large to small. Some meet up more regularly-once or twice a month, share their experiences, swap symptoms, stories, treatments, and some have guest speakers on related specific topics but all are dedicated to helping each other and raising awareness.
~STRESS~ Stress is not the cause of your illness/condition but it will dramatically have a worse effect on your symptoms.Try to reduce stress as much as possible!
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