sleeping woman the exhaustion of pain chronic illness

The exhaustion of pain

Something that I have learnt over the past few years is just how tiring it is to be in pain. When you have ongoing, daily pain, it takes up so much energy both emotionally and physically. I don’t think people really understand just how exhausting it is to live in pain.

It is so hard to pinpoint which aspect of having a chronic illness that is causing fatigue and exhaustion. Is the tiredness a thing all on it’s own? Is it due to the sleepless nights, the pain or is it an emotional reaction? I think for me, it is a combination of a lot of things, but I am sure that the pain makes things so much worse.

sam cleasby ostomy bag

Pain

I am in almost constant pain right now. The last surgery doesn’t seem to have worked and my stomach is swollen and misshapen. It feels like my insides are falling our both forward and downwards. I have to wear multiple support garments and take strong painkillers all the time.

I am so tired. I feel thoroughly exhausted. And I am sure that a lot of this is due to the physical pressure of constant pain. My body is working overtime to deal with it and the exhaustion of pain is so draining.

Tiredness

Tiredness and exhaustion is often overlooked as a small side effect, but it effects every single part of your life. Work, family, friends, intimacy, diet, exercise. How can you cook a healthy meal (even though you KNOW a good diet will make you feel better) when you are so tired, you can’t get out of bed, never mind get to the kitchen and stand and cook.

And it really effects my mood. When I am in pain and tired, I find it hard to be patient. I feel so down on myself and everything around me. I feel like I am weak and powerless and it sucks.

There are of course medical reasons for tiredness and if you are experiencing new tiredness with no reason, you should see a GP. Unfortunately for a lot of people with chronic illness, tiredness just becomes a way of life.

I suppose I am just trying to find a way to explain this tiredness to others. I worry people think I am lazy when I spend my time in bed. Or that I am rude when I am yawning and dropping off. But can you remember a time when you have been really poorly, and that draining feeling where it feels like every ounce of your body’s energy is being used up fighting illness? Well that’s how I feel most days.

Exhaustion is something I need to learn to live with, but today it all just feels too much.

Peace and love

Samxx

4 replies
  1. Pam Hastie
    Pam Hastie says:

    Hi Sam… Yes I relate to you re constant pain. I have colostomy bag as well as illio conduit bag (in other words I come with baggage) I have had rectum removed and a flap built to cover rectum area. Was in hospital for a year. I still have probs with nerve damage after rebuilding rectum area.
    Just to get pain killers from doctors or chemist’s in Australia is so major….. There’s a shortage of doctors in regional area I live in in Victoria… They treat you like a drug addict not realising the huge trauma that I live and go thru on a daily basis. I have to fly down to the city on a regular monthly basis for scans, doc and surgeon meetings ect ect. In Australia you have to be assessed and if you want pain killers it has to be revised by a group of doctors in another state that have no idea at all of the pain you live each day…. Theyre trying to control the drug problem in Australia and forget that there is some actual real people with real pain… Its a shocking process to deal with. There’s a shortage of doctors in my regional area… So it’s just like adding fuel on top of a burning fire.
    Heaven only knows what will happen, I’m just living it all on a daily basis and hope for the best.
    Cheers Pam

    Reply
  2. T.R. janus
    T.R. janus says:

    Hi Sam, I am so sorry that things are not going well for you. I wish I had words to say that would help you feel
    better, but I don’t. I have been where you are with all the doubts and fears that you have. It is a really helpless
    feeling and not one that I like as I’m sure you don’t either. My thoughts are with you and your family and I will send
    positive, healing thoughts out for you. Take care of yourself.

    Terri

    Reply
  3. Laura
    Laura says:

    The opiate crisis in the US has led to the situation Pamela describes. Because of all the overdose deaths, those who need pain relief, are undertreated or have to use OTC NSAIDS which destroy the intestines over time. My husband had a stomach hernia operation (outpatient) this summer and he was given 8 pills for 2 days worth of pain relief. That’s it. Cruel.
    Many people are looking into medical marijuana now because it is an option in many states–at least to help with sleep and apetitite. But insurance doesn’t cover it and it’s imprecise way of getting chemicals which haven’t been tested.
    And the healthcare workforce is overwhelmed. If you have a good doctor, encourage them to take care of themselves so they can continue helping people.
    I think caring for addicts needs to be completely separated from caring for people who have physical disabilities that require maintenance pain medications to function at all. Otherwise they will turn to street drugs or alcohol and end up dead.
    Marijuana may be a good solution since I’ve never heard of anyone overdosing on it but one can’t drive a car, etc…
    I can relate to Sam’s problem even cooking a meal when wiped out by pain. I wasn’t able to cook for 8 months the summer I had my two operations. My husband brought us frozen microwave dinner, some of which were pretty healthy; some had too much salt.
    Cooking dinner is still a challenge, especially now that my husband needs a renal diet which is basically vegetarian (but with many veggies restricted) and a small amount of meat. Very simple plus we buy Boost or Ensure supplements to help out. We might eat the same dinner for 3 nights. Often a salad, cukes, radish, carrot with chicken breast slices sauteed with herbs or chili powder in olive oil. Or I’ll make a hearty chicken noodle veg. soup for 2 nights. Grilled swiss sandwiches for 2 nights. Breakfast is usually a fortified oat cereal or oatmeal and coffee. Coffee helps with pain. Have reduced wheat and glutens. My husband likes to eat lactose-free vanilla ice cream every night and sometimes I make up a boxed brownie mix. Just simple things that don’t require standing or too many pots. Washing dishes is something I dread. Sometimes I get paper plates when I feel weak. Do not feel guilty. My mother used to say “No one will starve if there is food in the house.” So I order some pantry items from Amazon! Whatever eat-at-home meal strategy works for you is probably better than eating out or take out.
    For your possible new/old hernias, maybe read online research papers on PUBMED or the UK version can help you figure out what is being done currently. There may be hints about what you can try or who you can consult with.
    Is marijuana use legal in the UK? If so, is that an option to try? Best wishes and prayers for solutions for you and others. I’m optimistic about our mutual ability to find workarounds but personal study is needed. Fears? Take them to God and antidepressants can help!

    Reply

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