Jump to content
Isabel

How can i keep going

Recommended Posts

I had sepsis after surgery in 2012 resulting in 6 months in hospital. Sedated in ICU. I wrote my story on the forum in July 2015.

 

My medical problems are many resulting from it.i have come to a point I dont want to keep going. I have had amazing doctors but recently a new GP has said they just dont know how to help me. I dont know what to do. I'm so tired. I have a busy life I'm 71 and live in McCarthy and Stone apartment. Have wonderful friends here. I make cards . social things. So I'm not hiding away. Its just pain, problems all the timep and when I am indoors I am exhausted . I'm on 12hourly slow release morphine. Thats apart from other medications. I wished they had left me in 2012 .

Share this post


Link to post
Share on other sites

Your post really hit a chord with me. We do all have worse than usual days and I hope this is just one of them for you. Life is most definitely not what it was, and often when I think things are settling into more of a manageable routine, something else happens. The past couple of days I am feeling quite dizzy and light headed and I can't quite figure out why. But I haven't started writing to talk about me!

 

Mindfulness has genuinely helped me a lot over the past few years. Having a couple of good friends/acquaintances can help, but you are right when you say that no one really understands what we are going through. I have learned to be more gentle with myself, take more time to do things and pace myself. I was an extremely driven, active person so the transition to post-sepsis life has been extremely challenging for me too. We have to gently check ourselves when we look back on 'how things were before Sepsis'. We have to accept the differences and try to make something positive out of what has happened. That might seem impossible but somehow, somewhere, there is someone who has suffered more than we have and we have to be grateful for what we do have, no matter how little.

 

For now, please accept a big cyber hug across the Internet! Find 3 things to be grateful for today and celebrate them. No matter how small they might seem. Xx

Share this post


Link to post
Share on other sites

Hi Isabel

 

I am so sorry to hear that you are feeling so desparate. You are not on your own there are many sepsis survivors who struggle with its aftermath for many years.

 

It may be helpful to talk to one of our support nurses about how you are feeling. You can contact me directly on larry@sepsistrust.org

 

We can talk via email or better still I could arrange to call you. We are hear to listen and suggest things that may help you.

 

Have you spoken to anyone about how you are feeling, it is important to share, many of the effects of sepsis are often hidden, and after a while those affected keep many of their problems to themselves, believing friends and family are weary of listening. Our support service is completely confidential and you can be as open and honest with us as you wish to be.

 

Best wishes

 

Larry

Lead Nusres support

UKST

Share this post


Link to post
Share on other sites

Hi Isabel

I'm no just how you feel I too had sepsis in 2012 ITU sedation venerated in hospital for three months after a ruptured bowel which was undiagnosed for 10 hours.i too live on strong painkillers, I am 47 now I carnt work due to pain fatigue head aches and just not very with it, I do pace my self and that is the thing you need to do, if you have a busy day make sure you have a few days to recover where you rest, no your limits and listen to your body, it's the only way to cope trust me you don't have to stop doing all the things you love just do them in small doses and rest when your body tells you, no what your limitatation are so you don't overdo things. And yes mindfulness and relaxation is a great help it work for me I went on a pain relief course which your doctor can refer you to and I would recommend to do it, it's well worth it you we'll find that there are other people in similar boats, you don't feel so alone.

Your not alone we are here for you, life is still good it's just learning to live differently to how you did before sepsis.

Hope this helps

Derug x

Share this post


Link to post
Share on other sites

Thank you all so much for replying so very quickly. I used to respond on forum to members to encourage but have not felt like talking about me in case I dragged someone down. The most positive thing today is to have written to you. I'm glad I did. I have done everything my GP has asked as I have PTSD and been on medication for that 3 years. I've done 18 months at pain clinic and had CBT. Also Steps to well being. Larry I will email you and would appreciate a call.

Not connected I know but I have to have both hands operated on as thumbs have crumbled and wrists weak because of it. I ask myself can I cope with it but the knowledge I could be painfree must be better...I hope. Bless you and anyone.

Love Isabel

Share this post


Link to post
Share on other sites

Thank you all so much for replying so very quickly. I used to respond on forum to members to encourage but have not felt like talking about me in case I dragged someone down. The most positive thing today is to have written to you. I'm glad I did. I have done everything my GP has asked as I have PTSD and been on medication for that 3 years. I've done 18 months at pain clinic and had CBT. Also Steps to well being. Larry I will email you and would appreciate a call.

Not connected I know but I have to have both hands operated on as thumbs have crumbled and wrists weak because of it. I ask myself can I cope with it but the knowledge I could be painfree must be better...I hope. Bless you and anyone.

Love Isabel

Share this post


Link to post
Share on other sites

Hello, Isabel, I have also experienced most of what you shared after Sepsis in 2012 when I was in ICU for 7 weeks. I too am 71 (only male!) and have had several further setbacks with a blood condition and with severe depression. The single thing that helped me most was a great mental health physio who concentrated what was going on in my head while I learned to walk again, use stairs etc. I don’t know if such help is available near you, but I would say it might be worth pursuing. I wish you every blessing in the time ahead, and support as one who has also considered if life was worth living. Yes it is! Brian W.

Share this post


Link to post
Share on other sites

Oh bless you Brian. I will certainly look into that and like anything I've been given will give it 100%. I am so pleased you have been helped as that gives me hope.i suppose I am a person that loves to help others but need to have boundaries of when to rest. Also i tend to think ... Ive had a rest but maybe not enough. I dont know..my head is always on the go !!!!

 

Isabel

Share this post


Link to post
Share on other sites

Hello, Isabel,  So sorry to hear that you are feeling low. Some good advice here, I would definitely consider ringing Larry for a chat. I would also consider asking to see another GP at your Practice and letting them know how you are feeling. They may be able to refer you to a Pain Clinic to try and optimise your pain relief, it maybe you have to try a few different combinations to get something that helps you get on top of your pain. Not sure where in the Country you are Isabel but we have a number of UKST Support Groups across the UK now and if you felt up to it you may find it helpful? We don't have all the answers but it is a safe place to ask questions, feel supported and we often find we can encourage and help one another. With kindest regards, Julie Sepsis Survivor and Volunteer UK Sepsis Trust NW

Share this post


Link to post
Share on other sites

Hi, Isabel,  Sorry just seen in one of your replies to others that you have been down the Pain Clinic route already. However, do your medics know this hasn't helped and that you are still in lots of pain? Something I personally found helpful was a couple of  NLP (Neuro Linguistic Programming) sessions. Not available on the NHS but suggested by my GP when I was struggling....it really helped me reframe what had happened and move forward at a very difficult time in my sepsis/PTSD recovery.

Wishing you well, Julie 

Share this post


Link to post
Share on other sites

Dear Julie

 

Lovely to hear from you. I'm Christchurch in Dorset.

I would love a support group. I dont know what it takes to raise one and how much to start one. A mammoth task I would think.

 

I will look up NLP. Larry is ringing me as you can relay better than emailing. Plus my laptop has given me up so typing this on a phone isnt good. Think because my hands operation soon I will look at ipads.

 

My expectations were probably too high too soon. However I know I have come a long way. Its just others who cant understand ...take a tablet or we all get pain they say....so I dont ever talk about it except 2 friends dear friends.

 

Many thanks again Julie bless you. Bless you all

Love Isabel x

Share this post


Link to post
Share on other sites

Morning Julie

 

I had a good helpful chat with Larry.

 

I have always been honest with my GP about how i feel so they know how things are. My usual GP has told me they are there and I can go when i need to. It was the new one that threw my safety net when he said the doctors dont know what to do for you. I wont be seeing him again.

 

I have sore problems with my stoma and am going to hospital today about it. So that doesn't help also my bag leaked and soaked the bed BUT I'm still coping so great eh. If you can do it so can I.

 

Tomorrow is a new day new start. ???? thank you very best wishes Isabel x

Share this post


Link to post
Share on other sites

Hi, Isabel, It is tough and I'm glad you have been able to speak with Larry. Be kind to yourself, a cliche, I know....but treat yourself as you would a good friend who has been through what you have........just saying!  Glad to hear you GP us supportive too.

 

I will make some enquiries for you but I think there is a Support Group in the Bournemouth/Winbourne area. (but my geography is not brilliant!).

I have set up a couple of Support Groups now..... there is not a lot involved really but you do need some energy to keep things rolling so need to be fit and well. Basically I source a suitable room (Churches/village halls often reasonable) and take along tea/coffee/biscuits etc. Get there early to set up and meet and greet and clear up at the end. Larry or Oliver come along (really important, in my view) to have clinical support. As survivors we often have lots of hints and tips to help one another and sometimes just knowing someone understands how you feel is just so so helpful! Laughter, tears and sharing plus great advice from the UKST reps too. Usually start small with one or two attending then the Group grows and folks tend to support one another both in the Group and also by email etc in between meetings.

Hope today's a good day for you. Julie x

Share this post


Link to post
Share on other sites

Hi Julie.

 

I am sorry for my delay. I have emailed Larry today as I've been having painful times. I haven't looked into NLP yet. But once I have had hand op pre assessment June 5th I can look into it.

 

Bournemouth is only about 10 minutes away but I did think maybe Bristol was my nearest one. I can see your logic in saying how much better I would need to be to do anything to help a support group. We have several places around with potential for getting a hall.

 

You have worked so hard to have started groups. Also to get that far does give me hope.I suppose we all want to run before we can walk.

 

I hope you are having a good day too. Have a good weekend.

 

Best wishes and thank you

 

Isabel x

Share this post


Link to post
Share on other sites

Hi everyone

 

I thought I would give you an update since I last wrote.

 

Larry has been a great help and support also Julie, Brian and Gillian thank you for your replies. What would I have done without you. It just shows what a difference the forum, talking and sharing worries can make. So please hang in there and share.

 

I have been doing a big effort at pacing my day. I know not every day is the same. I would usually go from one thing to another never thinking tomorrow is another day....if I feel ok.

 

I feel good today ( which is why I am writing ) and have told my sister I do. She was so pleased I thought from that response, its just as important to tell someone ' I'm good ' and make their day too. Tomorrow may not be but at least I know I can have those moments.

 

I have seen my GP today. It was a very good appointment and he has reassured me they are always there for me. I feel much better about that. Couple of other things have been dealt with so I am certain it must have all helped me.

 

Julie

I have had a long chat with a NLP practitioner. It sounded like something i would benefit from.

 

I have been for my pre assessment for my first hand operation once I have the date, which hopefully is soon, we will set a date. Thank you for your help and hope you are doing well.

 

If I have helped one person my letter is not for nothing but please write if you are having a bad time or share your good day. I did and had precious important help back.

 

Take care.

 

Best wishes

Isabel

Share this post


Link to post
Share on other sites

Hi Isabel , I pop in from time to time to read various people's posts to see how Sepsis affected them .

After reading your opening post it got me thinking whether you were suffering from some form of Arthritis - Before I contracted Sepsis back in December 2012 I was taking 3 diclofenacs a day to treat the pain I was getting from arthritis - In April 2011 I had an operation on three of my lower discs , the Surgeon told me that normally he would have pinned my spine but a the rest of it was in such a bad way from arthritis my back would have collapsed [ I think that's what he said anyway ] .

I was on a Life Support Machine and Dialysis for 3 weeks ,  I was in ICU for 4 weeks , my stay in hospital lasted 3 months .

I died for several minutes when my heart gave way - the Doctors told my wife that should I live I would most certainly be suffering from brain damage , the Doctors inserted a temporary pacemaker telling my wife that the procedure could kill me  - it was touch and go for a few days but I survived and apart from a memory problem my brain was unaffected .

Now , upon coming round properly I was told that I would no longer be allowed to take   Perindopril or the other blood pressure medicine I had been taking prior to the sepsis happening . After a few days the pain from the arthritis returned , my fingers and wrists hurt - they gave me diclofenac but my sole kidney reacted badly to it  so Diclofenac was added to the list of medicines I wasn't allowed to take . 

Upon coming home I agreed to take Allopurinol after refusing to take it for years - my arthritis disappeared - ok I get the occasional flare-up but in 5 years + I can say that's happened maybe 3 times - 

I too have to take very strong opiates because of my back problem , 2 x 60mg Dihydrocodeine twice a day - they make me feel lethargic and it takes a lot of will power to get out of my chair some days , I can't walk very far before having to stop to sit down , I trip and fall on occasion and I do tend to worry more than I used to [ could be the opiates ] ..

However , I'm still alive , I have the best of families around me and I live in one of the most beautiful places on God's Earth , I have a lot to be thankful for . I wish you well , Isabel .

 

  Peter .

Share this post


Link to post
Share on other sites

Peter please accept my apologies for not replying sooner. It was lovely of you to respond.

 

I have had surgery on one hand. Yes you're quite right about arthritis. It has affected many places.

 

My thumb joints have crumbled and on August 7th had a bone taken from my forearm to make a new thumb joint. Isn't that amazing. Its still an ongoing recovery but much easier.

I had nurses twice a day for two weeks but found opinions on painkillers differed with my GP.

 

Last week i was in two days having my 6 monthly bladder procedure which has been done since sepsis. It went well no problems found, no biopsies needed.

I do have a very large stoma hernia which is affecting the stoma and groin so have another hurdle to go but will deal with it.

 

I dont know if you saw Dr Ron Daniels on Good Morning Britain television this week. Listening to them all talking I related to all what was said. In a weird way it gave me some comfort. I wonder if any other survivors felt the same if they managed to see it. It just backs up the theory Sepsis Awareness is so important.

 

You have been through SO much too and i know you think will I come through the other side. Thankfully we did, if we didnt have wonderful people around us it could have been different.

 

I'm in a better 'place' thank goodness but repeating what was said " post Sepsis is horrendous " but we work at it....all of us dont we.

 

Take care Peter I know, as I do we log in from time to time and you wont see this answer for a while. But none of stop remembering all others struggling.

Take care

Isabel

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...