Not coping with Chronic illness

Discussion in 'Life Changing or Long Term Physical Illness (New)' started by Sickyclickymum, Oct 13, 2016.

  1. Sickyclickymum

    Sickyclickymum New Member

    What do you guys do when you have low moments? I'm feeling incredibly low tonight, in pain, tired but can't sleep and just feel alone. My hubby is on shift till 1 am tobight then on brekkie shift and I will be in work before he gets back so I won't see him until Saturday now. This month has been incredibly hard. I feel anxious and scattered. I keep having horrible thoughts and not shaking them. I haven't felt like this in years since I was in my wheelchair like this last time. I just don't know where to turn. I don't have any close friends I feel like I can talk to. I have ehlors Dan Los syndrome and was managing it, I went back to work after years of being bed bound/ wheelchair bound and stuck, everything was great. We had another child and my body has just gave up. I have dislocated both hips and have gone back on two crutches a few months ago and last moth back in my chair. I'm getting every illness going with being run down, am in agony and just don't see an end. Now my back is getting bad again with being in my chair. I cant go back to being that person, sat in. Letting my girls down. I missed out on my first toddler years and now reliving that hell. I'm sat alone most nights with the hubby working crazy hours. I can't go out and socialise as I'm not mobile. I have been to and from from the hospital and now have to wait till the end of December to see the surgeon to find out if they can operate so in the mean time this is it. Sat in, house getting a mess as I can't do it all, my toddler frustrated and bored as I'm stuck with play times, my 8 year old spending most of the time a my mum's because I physically can't get her to school and then by the time my hubby gets back I'm too tired and in pain to be a good wife. Im not coping at all. I think I'm going to have to stop working now as well as its costing us more money in taxis and then I'm physically done in after the small amount of hours I'm doing and it takes two days to recover. I worked hard the last few years to get here and now it's slipping away. I'm in agony with my hips but can't take strong painkillers with having my baby with me. I'm so scared that something will happen and I won't be capable. I'm really sorry for whinging and moaning and I know a lot of people have it so much worse than me. I just needed to write it down and get it out.
  2. Brittless

    Brittless All I loved I loved alone...

    Hello sickyclickymum,

    welcome to the forum. First of all you are not whining. Just getting your story out, which you are allowed to do. Feel free to share whatever you want here. We won't judge. I in particular understand your situation to a degree because I also have a chronic illness. It's no little minuscule thing. It's a big deal and people don't understand the toll it takes on your everyday life.

    In low moments.. for me and the way my illness works, I try to relax. That sounds incredibly easy and simple but it's the only way I can stop focusing on the pain. Massage oils and rubs help. Not enough, but even a little is a relief.

    I try to release the anger inside of me. I'm already dealing with pain. It's too much to deal with the anger and bitterness that comes with it.

    I know how much an illness can impede your life, especially your social life. I was going to suggest doing something at home you enjoy. If there is anything that doesn't require doing too much that might cause you pain. Maybe if you enjoy reading, you can start a book club and have people come over... if that's possible and if you think you can handle that. Obviously it doesn't have to be a book club, but same concept can be applied to other hobbies.

    I know that work is tough when in pain. For that I have tried looking into online jobs - which might help prevent more pain and keep up your morale while you're at home. I have found online work but as you probably know the work can be iffy and hard to come by, but still it's there and could be an option for that predicament.

    These types of things have helped improve my life since I got my illness. It has by no means fixed it, obviously because I'm here, but it is an improvement.

    Sorry if this abysmal advice but it's really all I have.

    I hope you can get your surgery and regain your mobility.
    Sickyclickymum likes this.
  3. Unknown_111

    Unknown_111 Forum Buddy Staff Alumni SF Supporter

    Welcome to the forum and the SF family. I am sadden by your story as you are hurting a lot but you are amazing in that you struggled with your illness and managed to cope. There is nothing to be frightened off as you are a fellow person who is hurting from isolation and trying your best to cope. The isolation is causing your mind to go into overdrive and increase your anxiety. We welcome you to the forum where you will find online company to help you get through the day.

    Please take us the suggestions as suggested by @Britless as they will help YOU. Please keep posting as we will help YOU get through this tough period and try to be strong for yourself until December. I hope it all works out in December but consider us as your family in the mean. Don't worry please and be reassured that there are others in the world who feel your pain and want to help YOU.

    GildedFlowers likes this.
  4. troubledmind

    troubledmind Active Member

    Hello!! I hope you and your surgeon can come up with a solution.. How bad is your not working going affect your budget?? Maybe you can get SSI..
  5. Sickyclickymum

    Sickyclickymum New Member

    Thankyou everyone for replying, it has really made me smile. I have spoke to my doc today and figured out as I am stopping breastfeeding my little girl at the minute, I am going through a hormone crash. I have struggled in the past feeling low when I am having flare ups and that is just something I have dealt with but the last few days really scared me. I think, knowing why I am feeling so anxious helps a lot. I am so glad I found this site though. Just knowing that there are people that are willing to listen with out the usual eye roll and oh just get on with it attitude is amazing to feel. Something I haven't felt in a long time. My hubby is fantastic but as I say works crazy hours so I don't have him to lean on right now. I have been in work today and spoke to my boss and will be doing more from home so that helps. I am a senior youth worker so for a while I can step back from sessions and case work and do more organising and paper work for a bit. When you get in your head you put a negative spin on everything and don't see a way out. I think pride sometimes gets in the way as well. I am in a lot of pain tonight after work and still feel really down but last night I was just crying constantly for hours and couldn't control it at all. I went very dark and had some very bad thoughts that my children are suffering with me and that it was cruel for me to be here but the doc explained to me today that when you bf you release oxytocin and as yesterday was the first full day I had not breastfeed my girl, everything crashed, it would of been like being on antidepressants for 16 months and then all of a sudden stopping. Hopefully in a few weeks I will start feeling better. Just have to make it to then with this bloody panic feeling over me! But at least I know why that is happening now and its not just something wrong with me that can't be fixed.
    Brittless likes this.
  6. Brittless

    Brittless All I loved I loved alone...

    I am glad to see more positive things from you. I agree. Knowing why is very satisfying and takes a lot of stress out of the confusion. Pride is definitely something I struggle with too.
  7. Chronic illness is really difficult to advise on, especially because every case is different.

    I won't belittle your experiences by saying 'I understand', but I'll share my experiences and coping strategies and see if this helps?

    I have severe chronic pain, caused by arthritis in every joint below the thoratic part of spine. This is caused by my walking pattern caused by bilateral clubbed foot and numerous operations. I am also severely visually impaired meaning I cannot easily use the wheelchair I have, both because of the work I do, and because of the fact that 80% of the time I dependent on my blind cane (I call it that - forgive the political incorrectness). What makes this worse is that I am then always in pain, and have numerous other conditions which all interact with one another. To add to this, my disabilities are practically invisible, I do not receive physical support and am 22. This means that people look at me with skepticism and I have even got abuse - which makes coping with an already difficult situation practically impossible.

    However there are ways to cope. One thing is don't be afraid to pamper yourself. I am being serious, I have learnt when I come in from a hard day, in which I have had flare ups and been shouted at, or whatever, I have a long hot bath and I shut the world out. Literally.

    Also, it sounds ridiculous for someone who is in a lot of pain? Sports. I felt a lot better when I used to practice martial arts. I would practically be carried from the class, BUT the frustration I was able to release in a safe and physical way? It really helped in my confidence with my conditions, and helped me learn my parameters and pace things much more.

    Know when to rest. This is essential. Do not be afraid to say 'no' if someone asks you to do something - it is better you be assertive (and sometimes seem rude) and have that ten minutes to rest than not be able to walk properly or cope that day. Sorry, it may seem selfish, but sometimes with chronic disability, you have to put your needs first, provided it is safe and ethical to do so (by that I mean, like in my job where I work on a locked psychiatric ward for older men, sometimes you cannot put yourself first and it be safe - such as when holding up a patient, but if you're on a bus and someone can stand but are asking you to move? Say no. Or if you are asked to lift something, say no).

    Anything else I can say? I honestly don't know :) it's really personal is chronic disability, and everyone copes differently. It helps to have a buddy, of a similar age and stuff, who can get you through. Someone who you can say 'actually, how do I do this' and swap advice? :)