Under Pressure

I try not to write in anger. I would much rather keep things positive and not let frustration get the better of me but what the hell, I’m human and I am allowed to be frustrated. I’m allowed to be angry.

For a wheelchair user pressure sores are the risk involved in enjoying life, always lurking in the shadows waiting to pounce. If I am out of bed for the day, say 10 hours, I am sitting in exactly the same position and putting pressure on exactly the same areas without a seconds relief. Think how many times during the day you are up and down and moving about. Even when you are sitting for a prolonged stretch you constantly shuffle and readjust, often subconsciously. If for 10 hours I happen to be sitting on a crease in my jeans or if a seam is out of position the consequences can be cruel.

This happened a week ago. After a day out at the cinema followed by a night watching football with a friend I went to bed and heard the words I always dread, “your skin is broken”.
At the base of my coccyx there was an area no larger than a fingernail without any skin covering it. Could have been a number of things, too many to speculate, but the damage was done.

In years gone by I would have ignored it, my invincibility complex convincing me it’s nothing to worry about but last year I was taught a severe lesson. After ignoring a small pressure sore I continued to get up as normal, rubbishing any advice from my carers or nurses. I ended up spending three months stuck in bed and missing all of the summer (as much as we get in Scotland). So now I am cautious, something very unnatural to me.

I have been in bed for one week now. Spending six hours on my right hand side before being turned to spend six hours on my left hand side. Back to the right, then to the left, then to the right and so on and so on until day and night become the same and one day merges into the next.

I am so uncomfortable. I’m lying so far round on my side it’s not natural, not for six hours without an inch of mobility to relieve any pain. I am so bored. Social networking can only occupy my mind for so long, I can only watch so many films a day, I can only sleep for so long. I am so irritable. I keep snapping, biting the head off those trying to help, cancelling visitors because I don’t have the energy to socialise, only harming myself by turning everyone away. I am so f*cked off and I am angry that after all the shit I need to deal with I’m now expected to put up with this.

Why give in to the anger today? I was supposed to be getting up, my skin should have been healed. The district nurse came out this morning to remove the dressing. After looking at it last Friday everyone agreed that the weekend would have been plenty of time for the healing process to finish. Apparently not.

She says so cheerily “that’s great, only another couple of days”. Go f*ck yourself, that’s what you said a couple of days ago. Don’t they realise that another 48 hours of lying in pain and trying to pass one minute at a time is not “great”? Sometimes in my darker moments I wish this on others. Not forever like me but just for long enough so they have some understanding.

Anyway, this is the first time I have written in anger. It doesn’t feel any better which I suppose is a lesson but it did pass some time.

What time is it now?

Is that all???

Bloody hell!!!

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54 Comments

  1. I have my moments too … and my mum have problems like yours where her skin breaks, on her legs and it takes age for it to heal, but your situation would drive me insane and I would be angry … on everything and everybody. It’s healthy to be angry *smile I’m glad you have a forum like this to express your through. We need our bad moments … to be released.

    • I always associated getting angry with showing weakness. As I said, to hell with it! If being this angry makes me weak then so be it. Just trying to *smile as much as possible,

      thanks x

  2. Getting angry shows your human, not weak. Get it out, rant! You have every reason to be p****d off! I’ll send a *hug* though, Mr Angry x πŸ™‚

    • Stop making me smile, I’m trying to be angry haha. Thanks x

  3. I liked this post because you DID get angry. I think getting angry, when you think it is a sign of weakness, is quite liberating. I don’t blame you for being pissed. I was going to let loose with a string of cussing to go along with you, but I didn’t want to joke and minimize your anger. I can’t for one moment imagine what you’re going through. Seems kind of your right to be quite angry. I wish we could do something to help. The only thing I can think of is if you want to be really angry some more, I’ll listen. (Read).

    • Yeah, it is quite good to let myself off the hook, let myself be angry even let myself be weak.

      You are helping Colleen, you always do πŸ™‚

      • I think you ought to do a blog asking people for the best verbal manner they have to express their anger. But they have to do it without cussing. OR OR OR!!!! You could ask for one example with cussing. And one example with out cussing. Best one wins. You pick the winner. And what do they win? The title. That is all they need.

      • In that case I would need to think up a snazzy title – The eXpletives Factor?

      • πŸ˜‰ That’s the spirit. If you need to be pissed/angry then let the world help you. I remember watching a tv show years ago where Valerie Harper (our Rhoda from Mary Tyler Moore show) played the mom. One of the kids cussed. She told the child that cussing is a sign of a lazy mind. So….let’s be creative on expressing our anger. But let’s have a shout out for those lazy minds …heaven knows we all have them. And then a creative outlet. Or…not. πŸ™‚ that’s the great thing about being angry… you can do whatever the bejeebers you want!

  4. Oh bugger!!! Have you tried shouting as many obscenities as possible, out loud? I always end up laughing. If you’re gonna be angry, do it properly. None of that namby pamby stuff πŸ™‚

    • My carers would pull my ventilator out if I annoyed them with any nonsense like that, it’s like a mute button. Don’t know why I put up with them πŸ™‚

  5. This is the serious response. I feel sick every time I see a pressure sore on Becky’s foot. It’s so controlling.

    Hang in there.

    • This is the serious answer. Can I ask if there is a reason you only mention Becky getting them on her foot? I take it that doesn’t leave her stuck on bedrest?

      • She wears splints to keep her ankles straight. This means she can stand with support. All kinds of benefits to this, but mainly to help with osteoporosis. The sores on her feet mean no splints for weeks, and a grueling schedule to “wear” them back in again; 15 minutes on, 1 hour off. When that’s okay, we can go to 30 minutes on, 1 hour off, and so on. It takes weeks, and is soooo restrictive. A few years ago, she had to go through Botox injections and serial casting to try and gain back some of the range she had lost. I worry we will have to do that again. I’m on my fourth attempt this winter to get her left splint back on. Two weeks and we’re only up to two hours wear time. Hope that answers your question?

      • I see. I can understand the frustration for both of you especially when it is more important than just aesthetics or sociability. When you know that it has an effect on the osteoporosis and can help to manage the future severity of it it becomes much more important. Thanks for letting me know

      • I’m glad you gave me an opportunity to ‘talk’ about Becky’s limitations. You are the only one who has asked.

        Thanks, Cheryl x

      • It was a great post. I think plenty of people who know you will be glad for that insight into Becky’s life and your relationship together. You should share more, tell the story that Becky can’t tell.

      • I should add, that Becky’s muscles are so tight that I have to stretch her to get the splints on. Once a day is bad enough, 5-6 times a day is brutal!!! Different challenges and restrictions to you, but I dread it.

  6. Lizmm67

    We always tell the kids we work with (behaviour issues) they are allowed to be angry. It’s how they deal with their anger that can be the problem. You have turned your anger into yet another well written insight into parts of your life we can often be too blind, ignorant or self absorbed to see. So anger can be used positively as you have just shown.

    • Glad I managed to keep my behaviour issues in order πŸ™‚

      It had all been building up over the week and I was sick of being narky to everyone. Glad I got it out my system.

      Thanks

  7. Jacks

    You should blog in the style of your mood, all the time. It’s ok to be angry! You have every right. I’d be pissed off with being stuck in bed 24/7 – at least when you’re in your chair, you’re able to get out & about. Seeing the same 4 walls daily would send anyone doolally!!!! Not that i’m saying YOU’RE doolally! πŸ˜‰ lol

    • That’s absolutely fine, I am well beyond doolally now! πŸ™‚

      Thanks

  8. Jacks

    Doolally’s good! I like doolally! πŸ™‚

  9. Hi Angry Bhoy πŸ™‚

    It is amazing how sometimes the most small and seemingly insignificant things can have the biggest of impact on our lives, not only physically but emotionally to. Anger is a natural emotion that we have and it can be healthy to be angry at times. It is much better to acknowledge a deal with emotions as they come along, avoiding them and bottling them up is not good for you or those around you. Anger only becomes unhealthy and a waste of energy when it remains a constant. I’m in a wheelchair at the moment but I’m able to transfer and stand on my one leg at times during the day. Even I have to be aware of the possibilities of pressure sores and understand how important it is for you on a constant basis. I have a couple of questions if that’s OK:-

    1. How do they treat your pressure sores? Is it just a dressing and waiting for the body to heal itself or do they apply cream etc. to help speed up the healing process?

    2. I thought that if you were paralysed you didn’t feel pain in the paralysed areas; I’m assuming from what you say that I’m wrong. Do you feel pain? Is it the same way as before your accident? Are you on medication still?

    You may be thinking of covering some of this in future posts and if so then I understand if you would rather not answer them now. I also understand if there are questions that you would rather not answer full stop. I really hope that sore heals quickly and that you do not get anymore anytime soon.

    Take care Steve πŸ™‚

    • In terms of treating a pressure sore it is different every time, just depends on the location and severity. Sometimes it’s a cream, sometimes a spray and sometimes an actual dressing. This time I have an adhesive dressing called duoderm. It’s a hydrocolloid dressing which means it creates a moist environment underneath the dressing to encourage granulation. Really good stuff.

      The pain I was referring to was nothing to do with the pressure sore, it was pain from lying on my side for hours at a time. Pain across the top of my shoulders, my neck and back of my head.

      Pain below the level of sensitivity is a really tricky subject to explain, maybe a post someday. I wouldn’t feel any pain if you branded me with a hot iron but I do get internal pain, indigestion or trapped wind for example. I also get ‘phantom pains’, you will know all about that I suppose. Sometimes my foot is agony for no apparent reason. Can’t explain how I know it’s my foot but I do. Also get terrible restless legs, that kind of pain.

      I don’t mind you asking, feel free anytime.

      Thanks

      Steven

  10. Anger would seem a normal reaction to me. Without a physical outlet -maybe kicking or punching something to alleviate the frustration -how else to purge your frustration than writing about it?
    My daughter is in physical therapy training and she only recently told me about how quickly a skin sore can happen if the body isn’t moving around. I’d never considered the subtle shifts I make nor how often they probably occur. You definitely have a challenging situation on your hands.
    Hoping it’s all healed very soon…

    • Was out of bed for the first time today, three hours. Not much to begin with but I’ll build up everyday and won’t take me long until I’m back to ‘normal’.

      It is very easy to underestimate the power of a little skin sore!

      • Hooray!! Glad you’re up again. A reason to celebrate. πŸ™‚

  11. scottishpirate

    Right, here goes:

    F****ING PRESSURE SORES! ARGHHHH!!!

    I can relate to what you’re going through a little with the pressure sores, but not to the extend that you face. I had some pretty major surgery 3 years ago. I will spare the details but basically the recovery was pretty rough and it left me pretty malnourished. The nurses were very careful and made sure to keep me on my sides etc. However, it was when I got back home that the damage was done. I had never had a pressure sore before and so I had never really thought about any sort of pressure relieving mattresses or wheelchair cushions, and I ended up with an ulcer on my left hip.

    It started off small and superficial, but the damage had been done deeper and it turned into a monster the size of a teacup!. Mercifully I have reduced sensation in my legs so it didn’t hurt as much as it might of done. It’s taken approximately 2 and a half years to heal, and even now I have a scar that can sometimes break down a bit. As you can imagine I now have a pressure relieving mattress and wheelchair cushion. Fool me once etc!

    I would say one thing though,,this is your blog, if anyone has the right to let of steam on it, it’s you! Never forget that. Besides, I think blogging can be therapeutic in a way that we might not realise sometimes.

    Failing that, Chebandbecky’s solution is ALWAYS good one!

    • It is scary how quickly they can deteriorate into a major problem. I’ve now had anything as severe as yours but then it doesn’t take much to stick me in bed. I have seen images of the type of thing you suffered from, not pleasant! The healing process is frustratingly slow, I think that’s the worst bit.

      Anyway, I’m glad you’re sorted now and won’t make the same mistake again.

      I’m glad that I unloaded on here rather than continue to treat everyone like shit. The support has been great, thank you.

  12. Per others, it’s ok to be angry. I think people who don’t let themselves get or express angry do damage to their emotional well being. Glad you are slowly healing up.

    • You’re right, it ain’t good to bottle these things up. I’m going to stop pretending to be 100% happy 100% of the time, think I was trying to fool myself more than anything.

      I’m back up and getting about again, thanks very much.

  13. I cry when I am angry sometimes; but that is common among women in the U.S. Nevertheless, it sometimes helps. My husband has a venous ulcer on his leg, which are difficult to treat for other reasons. The last one took two years to heal. His ulcer opened back up six weeks ago. The doctors at the wound clinic have suggested that he stop working for two months so that it can heal (he refuses) or that he just retire (and then how would we pay for the expensive treatment), or that he stop his medication for his blood disorder (which would be life threatening). I will pray for you. I think that it was good that you wrote this post.

    • I’m not adverse to a little cry now and again, thank you Ann. I hope your husband finds good health soon without unfair sacrifice.

      Thanks again

  14. Hi Steven,
    My God—you wonder WHY I think YOU are heroic! Holy Christmas! (I once studied to be a nun…actually, twice!…best I can do with the expletives) …I do know to some extent of what you mean about pressure sores. They are nasty devils! I worked as a nurse’s aide many years ago…I am so sorry that you are in such horrible pain! I can move and get up and down when I want–and you are stuck in that damn chair—I do NOT know how you have the strength to even write! That is WHY I think you are courageous! You rise above your pain and give life your best and you encourage so many others with your affirmative statements! Your words are powerful! YOU are a great man and my personal hero! and I am crying tears for you right now! I offer you my friendship…and love crystals to heal you! I send my tears of water crystals into the universe to heal you quickly!

    • Very kind words Jane, extremely humbling. Thank you very much.

      Studied to be a nun twice? That sounds like an interesting story!

  15. I shared YOU on my Facebook Page because I want others to know of your heroism!

  16. Steven, you are an extraordinary person and I feel honored to read your blog. The emotional generosity it takes to share this new condition and experience in your life….well, it just leaves me in awe of you. What you face on a day to day basis is well beyond what most of us can imagine. Although, and please forgive me if this sounds trivial, I feel somewhat trapped within my bipolar brain and paralyzed by its symptoms and limitations. And I too, in some very dark moments, have wished that others could live with this for a short time just for the enlightenment and understanding it would bring. Your words did not seem too harsh or angry (although who could flippin blame you?!), they sounded intelligent and genuine and……sad. Tell me, my dear friend, what can I do to help you? Is there anything at all? Please, tell me. You commented on my blog, “I’m Not Needy”, and I thank you for that. I see where we could have an interesting discussion about every single item I listed. You are amazing, my new friend. And I thank you for opening your life….and your very wonderful warm heart to those of us who could use the enlightenment and education. xoxoJulia

    • Wow Julia, don’t quite know how to reply to that.

      I’ve been having a bit of a rotten day and I’ve just received a couple of comments, yours being one of them, that have lifted the darkness. You ask what you can do to help, you just have!

      And you certainly don’t need to apologise for anything being trivial. Keeping up-to-date with your posts I can only imagine the struggles that you face. They may be different but they are most definitely not trivial.

      Thank you again for the right words at just the right time
      X

      • You’re welcome, my new friend. I discovered you and your words at just the right time also. Be well. And know that I am with you….xoxoJulia

      • Thanks Julia X

  17. Cha

    WOW!!!!!!! A brilliant blog (as always) humbling, heroic, honest, uplifting, inspiring, courageous ………………… but reading the replies – equally humbling, heroic……………..
    The world is a wonderful place full of wonderful, fantastic kind people and I am honestly humbled to be allowed to read this.
    I have nothing to add to the above comments on anger other than remember people do care, whatever you have to do, do it.
    Take care, Cha

    • Thank you Cha, extremely kind words.

      Now that the problem has cleared up I’m looking back at that post and amazed by the amount of positivity generated by something like anger. It’s a funny old world!

      Thanks again

  18. You have every right to be frustrated and upset. It seems like there should be better practices so that doesn’t happen. Your happiness is key to your health. It’s terribly hard to be happy when you’re isolated and bored. Isn’t there anything that can be done to prevent that? Something I’ve learned when I go through my own health trials is that if I’m stuck inside I have to keep my mind busy or everything will takes its toll and make things worse. You’re right, there’s only so many movies, books, jokes, whatever distraction people choose – my advice is to not simply distract. Make yourself learn something. I will suggest some science or mathematics. It’s been my experience that things like history and literature tend to get my emotions all riled up when I’m already feeling fragile. There might be days when it might not feel like it, but you do make an impact and a positive difference with your blog. Keep it up, and be kind to yourself. It’s okay to be angry sometimes.

    • A great comment, thank you.

      I think that keeping myself busy and active when I’m healthy makes any spell when I’m postponed even more frustrating. You are right, the time could be spent more productively. I will take your advice next time round. I genuinely will, not just paying lipservice. Thanks

      • I hope you will share whatever it is that you choose to do/learn. πŸ™‚ Maybe it will give me inspiration for more things I can do/learn. I hope you have a good day, Steven. πŸ™‚

  19. Steven, I am missing your postings! Letting you know that I am sending you a love Crystal! Who knows…one day in the next year or so, I may come knocking on your door to pay you a visit!

    • Ill be back posting very soon Jane, just needing a little break from the stress of voice recognition!

      Thank you, nice of you to drop by and say hello.

      Knocking on my door? You planning on being in this part of the world sometime soon?

      • Well…some time next winter, I plan to travel to Togo to see my daughter…and depending on the flight design–who knows?! Never say “never,” I always say. I grew up in a two street town with 10 homes–and I ended up teaching in Kenya for over two years…so one never knows where we will go! as Doctor Seuss said, “Oh, the places we will go!”

      • Words of wisdom indeed! My door will always be open to you.

  20. thank you, Steven! and my home is yours! Maybe one day you will venture out!

  21. Steven you are so brave and a true inspiration. Of course you are allowed to be angry. I fear that you seem to think it is futile? I wish I could wave a wand….I have recommended your blog to a dear friend of mine who’s daughter-in-law was paralysed in an accident on the 8th of December. I think they will find your blog extremely helpful and inspiring. I send you cyber hugs! Thank you for selflessly sharing your difficult journey!

    • It’s not so much that I think it’s futile, more that I am aware that being angry drags me down. I suppose it’s unavoidable, wouldn’t be human if we didn’t get angry now and again.

      Thank you for having the confidence to recommend the blog to your friend and her daughter. Please let them know that they can get in touch if they have any questions, can always e-mail me if they want to keep it private.

      Thank you

      Steven

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