What's happening with me

I would like to thank the people who posted concerns of how I'm doing after Bevvy posted about me .The last few weeks have been a bit difficult things seem to be hard

T

spiralling a bit out of my control .Last week I had a visit from a doctor who works palliative care in the community and in the hospice she came with the community matron who was doing a visit before her holidays .They shocked me a bit well quite a bit by asking me where I wanted to be at end of life not a conversation I expected to be having 6months ago .My sats have been dropping really low as far down the 60s everyone I spoke to not concerned I have been Going to PR giving it my best but finding it hard there is only me on oxygen there is one bloke who went on oxygen 16 hours in January and is excercising without his oxygen so I am finding it a strain my sats went to 78 today after one of the excercises I thought they would stop me from doing it I can't believe how much it takes out of you to do so little excercise .I spoke to a doctor at Thethe hospice yesterday he came to talk to me and asked me was I angry and if so who was I angry with I told him myself for smoking and the doctors for not given me the chance of PR before I was on oxygen like people in my class basically went for spiro test once a year given inhalers left to it have never seen a consultant but I know it's my fault .He said I should learn to forgive myself or I will never get any peace that I was one of the unlucky ones especially the way everything has progressed in the 6month since on the oxygen every little thing I try to do just seems impossible and it hurts that I can't do things my days consist of bed chair PR and hospice pain and sweats .Today had community nurse come to put me on her books it just feels like they are saying your life is over they asked how I was sleeping once again I said I'm not but nobody wants to give me sleeping tablets don't know how to cope with everything sending love and best wishes to all x

20 Replies

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  • So good to hear from you T2d but not happy that you seem to get care but not much happens. It's good that you have people coming in but a bit of a shock to have end of life discussions.

    Do come and chat when you feel up to it. Sending hugs. Xxxxx

  • Thank you sassy Frank has been to the hospice for a massage he is so tense it is a shock for both of us to have had that discussion I was hoping to have been able to do more to help him by now but can only hope that things may get a little easier soon xxxx

  • My dear, you seem to be going through so much so bravely. My thoughts and prayers remain with you always. Many blessings xx

  • Thanks so much very much appreciated xx

  • End of life discussion could be down to policy of asking sooner rather than later.

    Wish I knew what to say <3

  • Difficult conversation to have especially when you feel do low x

  • Time_2_drink I'm upset that you are feeling so unhappy today.... Maybe truth be,that you're just not happy with your whole situation at the moment.

    If I was sensible enough to have kept a diary, logging down all my feelings, up and down as the days went on,then I'd probably find I had more "down" days than "up" days!

    Please feel free to PM me if you want to,otherwise my advice goes like this:-

    Like you.I'm only human and us humans have things wrong with us. Ok so we never going to be able to fix things that are broken but we can,and there's proof,that we can make our lives a bit better quality wise etc

    I've also been asked about my wishes regarding resuscitation and at the time I felt like I maybe only had a short time left on this earth. It is a question that anyone with a chronic illness will be asked as a matter of protocol, nothing more.

    On my 2nd PR class,I was the only one on oxygen and I could see some eyes looking at my machine or me with curiosity. Its just that. Its quite irrelevant if two people are on your course using oxygen or just you. All it can give you is the fact that there is someone else breathing through tubes!!! There's never enough time to sit and explain your condition and the one going

    medical help you now need. The class would have finished.

    You've gone from never leaving your bedroom,to using your stair lift,adapting to everything that goes with having to use Oxygen,getting mobile and leaving your home with help from the wonderful Frank and a wheelchair. Attending local Hospice to get additional medical care,acupuncture etc etc.

    So why can't you see how much you've achieved and ......go on....I dare you.........smile, just ever so briefly,but smile to say,I'm just not lying in my bed accepting this illness, I'm not !?!?!

  • Thanks squirrel will talk later think bike has come xxx

  • I am delighted to hear from you but sorry things are so tough at the moment.

    Having said that I heartily endorse squirrelsholt comments. You are berating yourself for what you are doing when you should be praising yourself for how well you are doing! You HAVE gone from staying in your bedroom to having stair lift fitted to going to hospice to PR and so on. That is an amazing effort and you should be proud.

    Often we need to rethink our thoughts (I know I do) to see how well we are doing!

    Finally look how many friends you have here that Care and want to support you!

  • Thanks for your reply and concern for me so appreciated it is hard to come to terms with the way things are and fear of the future today I tried top. Put a little bit of ironing that frank had done but couldn't finish the task makes me want to scream and shout Iam appreciative of all of the support from this site x

  • So glad to hear from you again. Sometimes we're up and sometimes we're down - that's how it is! As others have said, you have achieved so much recently - think about how far you've come! I admire your determination. xx Moy

  • Thank you it is very hard to accept what had happened to me and how useless I feel even the simplest tasks seem impossible x

  • Nice to hear from you. None of us can truly know what you're going through but hope you get some comfort from our words of encouragement sincerely meant. Chin up! XXMoy

  • You've tried so hard during the past few months Margaret, don't stop trying. Why do you have to forgive yourself? I will pm you. Love Lilian xxxxxxx

  • Thanks Lilian xxx

  • Sending hugs t2d hope your feeling some what better soon it's a hard road to travel some days it's harder than others have a blessed day xx

  • Thank you Rhiannon it is a very hard road and when you want to do things but are unable even the simplest tasks it is so frustrating xx

  • I totally agree t2d it's very frustrating trying to do things we used to take for granted and now the simplest tasks are like trying to climb Everest that's how it feels for me some days I do hope you have a better day Hun breath easy sending hugs xx

  • I'm new to the forum, so I don't know what all you have been through. But your post touched me deeply. It made me sad to think you feel this is your fault. My husband is facing the same thing right now, and that breaks my heart. We've also had the end of life discussions that you speak of and it was hard...very hard. But they do need to happen. My husband said that it seemed that his doctor and I are just expecting him to kick off (his words, :-) ) any day. That isn't what we think, we just need to know his wishes for the future. I don't have the words to properly convey my hopes & prayers that you have a better day today. And know that we are here when you need to talk or have a moan. Gentle hugs to you.

  • Thank you for your post and I send my regards to your husband I'm sure like me he is feeling very scared and uncertain on what the future holds for us when we are finding it do difficult to do even simple tasks when the mind wants to and the body can not so hard to deal with x

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