I have a problem
Even here, where I feel comfortable, I have read a few comments and had to resist being not nice back because the comments are thoughtless. They probably aren't really, just that I read them that way. I look at people and think how stupid they are for some silly reason that really doesn't warrant it.
I don't like feeling like this especially as stuff is mostly on track. I know things will still go wrong as they always seem to but even that doesn't usually make me angry. I guess it's in my head because there isn't anything physical I can link it to. No medication changes or anything I can blame either though I did skip all my tablets for almost two days at the weekend because I was in and out of sleep so much.
I don't understand it and think I need to so I can snap out of it,
TK
Comments
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Hi TK
I, like many here, read your posts and follow your story. I wish I could do more to help but that is the limitations of a forum.
I know what you mean about getting angry at some posts ( I have probably made some poor comments ) I do to. People ask questions which seem stupid because we have answered the same Q's many times, But then I remember that I knew nothing about this stuff a couple of years ago.
Thank you for sharing your story with us, it helps to try and understand how others feel.
I have found that sometimes sleep is better than my usual basket load of meds so my times get messed up and head gets out of sorts for a while
We will do all we can to help and support you, albeit that is not much but know that we are here for you
CR
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Thanks @CockneyRebel I guess it helps a little to know someone cares.
I made the mistake today of looking for a surgeon who can carry out the procedure I really need. A disk replacement instead of a fusion. Evidently there are none listed in the UK as it's still classed as 'experimental'. This means I will have to argue with the doctors next week and I am in no fit state to handle it. How do I justify them doing a procedure they won't want to do? My MH state has dropped badly.
I posted it on FB for my kids to see but ofc they haven't bothered to reply or contact me in any way. It's at times like this that I really need their support and don't ever get it.
TK
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I am struggling to keep myself going. I have also complicated things by starting AD's. Now, not only am I avoiding going out and looking after myself, I am so tired all the time. I think the last time I had a hot meal was last Thursday or maybe Friday and haven't bothered to use the shower in over a week.
No energy, no enthusiasm and constantly tired. I know I have stuff to sort out but can't seem to get it done. Haven't even been able to keep up on the 2 or 3 sites I normally use.
I have appointments to see the specialist again and for the CT scan but haven't even arranged transport yet. Need something to kick-start me but if I do go out I come back so tired I just fall asleep.
No idea of the best way forward.
TK
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I'm sorry that things are so tough @Topkitten, I can appreciate how difficult it is to keep fighting when you feel so worn out. Let us know how you get on when you see the specialist and as always, know that we're all here to support you!0
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I have spent the last 2 days just siting and sleeping in my chair, barely even able to change channels. I have lost track of my medication and the pain isn't helping but having not taken the AD's I am at least a bit more with it now. I usually go out regularly on Thursday and Friday but that all went by the board. I'd rather be depressed than so completely dysfunctional.
TK
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Hi @Topkitten
It sounds as though you are really stuck right now and feel you have to choose between two evils, depression or dysfunctionality, as you put it. It is good that you have this forum and are able to express yourself but I do really feel as though you need more help. I know that in previous threads we have discussed other opinions and for various reasons you don’t feel that these options are right for you.
You are the best placed person to make the decision on what is right and wrong for you.
Rebecca0 -
In the last 2 weeks I have had 2 days where I was cold and tired all the time. Admittedly the AD's contributed but I am beginning to see a pattern. Recently my patches were increased from 75 micrograms to 100. Instead of using 2 patches to use the old ones up I am now using just 1. However, the older ones were no name cheapy Fentanyl patches and lasted 4-5 days. The new ones are branded and barely last 3 days, thus catching me out. The cold and tiredness starts when the patches show signs of running out. Alternatively it could be the make. I need to speak to the chemist about this because I think it may be avoidable.
TK
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It is good that you have identified what might be the cause. I really hope that you have and that it is avoidable , please speak with who ever you can asap and let us know.
CR
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I went to the surgery and chemist today. The chemist is going to change the make of the patches next prescription, assuming they remember. I tried to get an appointment with my GP. Was offered one on 28th December. So pointless and useless. Asked for a telephone appointment next and was given 11th December. The alternative was to ring up at 8am. With sleep issues 8am is impossible with the sleep issues plus I'd just get whichever Dr. was covering that day. one with no knowledge of my case. At least the 11th is before I see the hospital specialist, so I can update the GP with the progress.
In the meantime I have been given dates for the CT scan and Nerve Induction tests for the end of November and a date to see the specialist on 15th December. Hopefully they will then be able to set a date for surgery. The rate I am dropping things or knocking things over is rising alarmingly so I really need to get it done.
TK
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Hi @Topkitten
It's good that you have managed to see the Chemist and they have agreed to make the changes. Hopefully this might help you. Getting the dates for you scan and the NI tests seems a positive step forward from what you were saying a few weeks ago and you have a date for the specialist.
I didn't realise that GPs made appointments that far in advance?! But perhaps it might be worth speaking with the practice manager about why this is. It might be that your GP feels there isn't too much they can help you with right now until you have see the specialist? In my experience the appointments between Christmas and New Year get heavily booked up following the Christmas close down so that makes me think that perhaps there is a reason for giving you one?
I hope things go well for you at the end of November and please keep us updated
Rebecca
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I have spoken to someone else who uses the practice and they agreed 3-4 weeks is normal. Add to that xmas and that makes it seem about right.
TK
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