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philman

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philman last won the day on 31 May 2016

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About philman

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    Male
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    UK
  • Sepsis Aware
    Sepsis Survivor
  1. Hi Michelle, Just a quick post to reassure you that you are firstly, you are doing great - well done for battling on and getting back to work (although it sounds, like many here, you are finding you need to not over-do it!!), and secondly, yes you are going through the same draining fatigue among many other other symptoms that many of us are learning to live with and it seems to be normal for us survivors. Hang in there!! I am about 2.5 years out from Sepsis. I work 3 days a week as a music therapist and 2 days from home on my own business as a graphic designer, and to be honest the 2 days at home since sepsis have been rest days really and my business has suffered. However 2.5 years has seen some improvements, the fatigue can still really smash me, but it happens less often. I have learnt and am still learning to pace myself more (very frustrating!!). Still get leg pains etc and various other pains in my body. Still vitamin d deficient since sepsis. Have found that making sure I drink enough water daily does help. Used to be very fit prior to sepsis, and am frustrated that I have put on some weight over these 2.5 years as I can't (or am too afraid) to exercise like I used to. I would love to get running again, but fear that I may need time of work if i try!! One day - hopefully!! Anyhow, things are improving - but it is a slow process - be kind to yourself. If you have read any of my posts you may have seen that is took me a whole year before I had the energy to walk my kids to school - about a 10 min walk. Now I have no trouble with this :-) Like you are finding, there is very little support for us survivors, this forum is great, and a couple of facebook ones are good too, the NHS don't seem to have many answers and just put most of it down to chronic fatigue or post infection fatigue and say "there is no magic pill". I hope to get along to one of the UK sepsis trust support groups soon as i think it would be good to meet with others who understand what we are struggling with etc. But please remain positive - I hope this post doesnt come across as negative, yes I still struggle with health - but it is improving as the years pass. Stay hopeful, look after yourself, all the best... Phil.
  2. Hi Derug, I am about 2.5 years out from Sepsis - and yup still struggling :-( although a lot better than about a year ago! I find if I overdo life or have too many late nights or disturbed sleeps, i really pay for it. The rhumatoligist said i have been left with CFS / fibro type symptoms from the sepsis and there is "no magic pill" as he said, just "time". So I try to keep positive, thinking how much I have improved over these 2.5 years - but still have a way to go before my health gets anywhere near what it was before sepsis. Hey Derug, I live in Stoke - so not far from you guys - hi! Hoping to make it to the Manchester UK Sepsis Trust support group soon. Cheers, Phil.
  3. Hi Gillianflutes, Thanks for your post! Welcome to the UK Sepsis Trust forum. I have found this forum and a few facebook groups helpful on my journey post sepsis. I am 2 years out now - and yes I know you don't want to read this, but I am still struggling unfortunately. Similar to yourself, I have been told that I survived because I was a very fit and healthy bloke. I remember reading these posts saying at least 18 months to 2 years before you feel anywhere near better and thinking - no not me, I am young and fit and will get better much quicker! But, it seems that it is a slow recovery after all. Frustrating to say the least!! On the positive side though - I do have many more 'good' days now where I feel like I have energy and almost 'normal'. But I do find that just when I think I have cracked it and maybe I am better, then I will have a run of bad days feeling naff. I think a lot of it is to do with how much rest you give yourself - rather than try to carry on like nothing happened! I am struggling at the moment due to lack of sleep I think as we now have our 3rd child who is 7 months old but has some bowel issues due to being 6 weeks early - so sleep deprivation is taking it's toll on my already weakened body. So, my advice is to stay positive - look after yourself and be kind to your body, don't overdo things - you will get better than you are feeling now for sure!! When I think back to how ill I was in the months following sepsis, I realise I have come a long way :-) Keep safe... Phil.
  4. Right, today is two years since sepsis for me!! Not quite sure how I feel... blessed to still be here for my lovely family, but wish my health could magically go back to what it was before sepsis. Two years on and my body is nothing like the healthy one I used to have. Aches, pains, fatigue, restless legs, vitamin d deficiency, possibly permanent nerve damage in foot and leg any many other random issues. I know I am more than lucky and blessed to have kept all my limbs etc and be well enough to have good days where I nearly feel back to normal, but still long to not have the bad days where I feel dreadful and in pain, but look normal to everyone else!! Also, today has been the first day in many many months where I have had a bit of anxiety about sepsis coming back - I think partly because a pompholyx blister has burst on my foot (the foot where sepsis started from two years ago with a cut) and I am a bit worried about keeping it sterile (this is another issue since sepsis on this foot - pompholyx), and also I think being the two year anniversary it is playing on my mind today!! Argghhh post sepsis stuff really is naff!!!! But I know that I need to stay positive today and kind of celebrate that I am two years out from when it happened and be grateful for what I have today. So, a mix of emotions really, but thanking God for being with me through this. God bless you all - Phil.
  5. philman

    Leg Pain

    Hi Libby, thanks for the message and ideas. I too thought the sunken veins may be because of dehydration, but it doesn't seem to be that. It does seem quite random- although I think it maybe linked to when I have been over-doing things and got exhausted! The sunken in veins mainly happen in the foot that the infection started in when I got sepsis, but sometimes happens in my hands and arms too. I am thinking that the oedema is possibly caused by my lymphatic system as I also got lymphangitis when I was ill and my lymph glands took a battering especially my right groin gland which swelled that much they thought it might be a blood clot. The infectious diseases dr kind of hinted that once your lymphatic system has been damaged I may always have some problems like this. One thing I have found that has helped with the aches and pains is that I was tested for Vitamin D levels and found to be seriously deficient since sepsis. So I have been on Vit D suppliments for 6 months or so and have noticed an improvement in how tired and achey I am. Still not fully great - but better... and better is always positive!! :-) With the oedema I have not really spoken to the doctor about this - it isn't terrible, but I now wear just trainer socks as normal socks are a bit painful after a while. So I am not on any diuretics or anything for that. Thanks again Libby for your thoughts... Phil.
  6. philman

    Leg Pain

    Hi again Alison, Forgot to say that on my right foot where they think the infection took hold to begin with (I got a non blanching rash all over that foot. It was very painful and eventually my foot peeled like a snake. The non blanching rash started to appear on the side of my knee too when I arrived at a&e.) I get sunken in veins sometimes. I am not sure if there is a pattern as to when this happens, it seems random? So sometimes I will be feeling pretty run-down and really tired and my right foot and leg will ache a little more than usual and when I look, all of the veins on the top of my foot will be sunken in like channels in my skin. This is a bit disconcerting to say the least! It does seem to right itself after a few hours or so and then I feel a bit less drained. Not sure what this is - I have told my GP. As I mentioned above, I do also get edema sometimes in both legs, mainly around the ankles when wearing socks - so I find it better wearing trainer socks. I also have been getting similar feelings in my forearms, so almost like they feel they might burst, like they are swollen, but actually they don't really look any bigger? They kind of feel heavy too, but again this is not all of the time. Strange!! Ta, Phil.
  7. philman

    Leg Pain

    Hi Alison, Yup, I am another one with leg pain and sometimes edema. This November will be two years since sepsis. Like you, the months following sepsis I was in that much pain everything hurt. I could barely walk for about 6 weeks, and it took me a whole year to have the energy to walk my kids to school! My legs felt like they not part of me - if you know what I mean? Heavy, weak, not really responding to what I wanted them to do. Over what is nearly two years things have improved, but my body isn't back to what it used to be (used to be very fit and jogged with the dog daily). Exercise wipes me out and dr has said to slowly build up with small bike rides etc. About maybe 6 months back I started getting bone kind of pain in my legs - especially the tops of my ankles and also some swelling. Dr did more tests and I had seen online about vitamin d difficiency and how some other sepsis surviours were difficient. I had my vit d checked and it was extremely low. So for the past 5 months or so I have been on vit d tablets daily and things seem to be getting better - less all over body aches and my legs seem to be improving too. Still don't have all my energy back though. I think the sepsis does mess up circulation - as a lot of my hairs on my previously hairy legs (around ankles) :-D disappeared after sepsis - but since the vit d and trying to do a small walk daily some of them have been growing back! Crazy :-) Anyway, stay positive - things will improve - just be patient. All the best - don't over do it, and look after yourself. Phil.
  8. Hi again, Sepsis really is horrible - don't forget your body has had an almighty fight to stay alive!! This November will be 2 years since I had sepsis and I am still struggling. Remember in my post above that it took me a whole year before I had the energy to walk my kids to school!! Soul distroying and massively frustrating I know!! I remember being where you are feeling... but YES, it does getting better - but takes a long time to recover. Longer than I hoped :-( Again, I used to go jogging every day and was very fit and active, so I understand how frustrated you are feeling now. So nearly two years on, I am managing at work... I work two days from home though, which are sometimes just chill-out days, but managing the other days at work. It's all about learning to listen and be kind to your body and take things slowly. With the 'feeling good for 10 days then awful', that has been similar for me. I have had panic attacks thinking the sepsis is coming back too, this all seems pretty normal when reading on forums, but very horrible at the time. So keep going, keep being kind to yourself, rest, and keep safe. Phil.
  9. Yes, listen to Isabella... It is so easy to fall into the trap of having a 'good' day and then over doing it with the consequence then having many bad days after!! I also have learned the hard way. After my initial battle with sepsis I went back to work way too soon and tried to carry on as normal... but unfortunately this doesn't work!! You need to listen to your body and get LOTS of rest. Be kind to yourself, lots of sleep, lots of relax time... getting better from sepsis takes little steps, but things will improve. Keep safe, Phil.
  10. Hi Michelle, if you have a search through the forum you will see my story. I too didn't end up in ICU... well I was never even admitted - just sent home with oral antibiotics!! Since then I have been told by a couple of medical professionals that I am lucky I didn't die at home and it is only because I was a very fit and healthy chap that I survived. Sepsis, as I have found and am still finding wreeks havok with your body!! During the weeks that followed me ending up at A&E (ER) I have never been so ill in my life - I couldn't walk for about 6 weeks (my legs felt like they were not attached), excruciating pains all over my body etc too... my chest hair turned grey within the space of a week!! The sepsis effected my Pancreas, so I had pancreatitis which was like having someone stabbing me inside my chest, and also and inflamed appendix!! Probably more things too - but just to say life does improve - but at a frustratingly slow pace unfortunately. This November it will be 2 years from when I got sepsis, and I am still not 100%. My vitamin D is low so I have recently been prescribed Vit D and Calcium tabs from the dr, I still have all manner of aches and pains (i find stretching helps), still get fatigued, wierd flushed feelings... I could go on. It took me a whole year before I had the energy to walk my kids to school - this was really hard to take and frustrating as before sepsis I used to jog every night with the dog and was very fit doing other sports etc. I know this probably isn't what you want to hear - and hopefully recovery will be quicker for you, but I remember being in your position weeks after sepsis reading forums thinking 'surely it won't take me that long to get better'... it seems I was wrong. Unfortunately the NHS and it seems other health services around the world don't fully realise the after effects of having sepsis and what a tough and long process recovery really is. I to am 38. I have and wife and 3 young boys, and I always remind myself when feeling naff that I need to be greatful that I am still here for them. I long for the day when I feel full of energy and well, I hope you find that place soon too. All the best, stay positive, look after yourself, and keep in touch with us on the forum. Cheers, Phil.
  11. Thanks for your replies :-) I have an appointment with the original GP I saw on the 22nd so hopefully that will be a more positive experience! Yes, I found it really frustrating that the Doctor just dismissed all the symptoms and said it was in my mind! Before Sepsis I had never really been ill before, was very fit and well, never smoked, never drank alcohol etc. So I would have hoped that the Doctor would have seen from my history of being very healthy that I should know when I don't feel right!! I am not a hyperchondriac!! (or however you spell it!) Thanks for the support you all give as individuals and as the Sepsis Trust Charity. I hope to make it along to one of your support groups - possibly the Manchester one. Thanks, Phil.
  12. Hi guys, So after nearly 18 months since having sepsis I have been to the doctors to see if there is anything they can do to help me feel more 'normal'. The first GP I saw was understanding and has done a range of blood tests. A few came back abnormal so I have had to have them done again. The GP practice told me I needed to make an appointment to talk through the results and to discuss Vitamin D management. I made an appointment, but couldn't get one with the GP I saw originally. Anyhow, seems I need to redo another of the blood tests as it wasn't tested for some reason. So I saw this different GP today who basically said that, yes, my body has taken a beating from sepsis, but the after effects are in my mind as going through sepsis has stuck in my memory!! He said I need to put it in the past and get on with my life!! So I asked him why I had daily fatigue and the many other PSS symptoms when before all of this I was fit and healthy. He said that a lot of doctors don't really believe in chronic fatigue and similar things, and that I need to be positive and enjoy my life. Hmmm, not quite what I was expecting - frustrating would be an understatement!!!! Anyway, I will try to make an appointment with the original GP I saw and see what the blood results etc say. Unfortunately from reading posts all over the net, I see that many GP's don't seem to know much about life after sepsis or even believe that any problems exist for us :-(
  13. Hi Libby, Thanks so much for your comments. It is good to know I am not going crazy and also good to know that 'still feeling naff' is normal for what i've been through. The night before last, I had a panic attack before bed... I haven't had one of these for about a year - very frustrating. I think because i've had a rough week with pains etc, my mind was playing tricks on me and I was worrying that the sepsis was coming back. My legs and arms felt really heavy and my head felt like blood was rushing around it (after reading online these are all classic signs of panic attack apparently). Then those panic feelings make you think that it is sepsis starting again - a vicious circle!! My wife calmed me down and I took some paracetimol to help me sleep. My legs were then restless too. Thanks for the advice about when baby arrives too... I think I have probably been doing too much over the past few months thinking I could go back to my normal pace of life. I realise now that I need to look after myself! Looking at the support group dates I don't think I will be able to make one for a good while, but hopefully I will make it to one at some point in the future. Thanks for your support... Phil.
  14. Thanks so much for responding Julie. Yes I had seen about the support group meetings. I live in Stoke on Trent so I could possibly make my way to one of these either the W. Midlands one or the Manchester one. This past week has been one of the 'low' feeling rough weeks... Still plodding on with life and work, but just not feeling 'right' - I am sure you understand what I mean. Trying to get an appointment at our GP's is extremely hard... but I may try again, just to talk through things as I know it is easy to sometimes worry that any little niggle or pain is the sepsis coming back again. Anxiety over worrying about it coming back again has suprised me as before this I was a very mentally strong, laid back, no fear type of guy. This is frustrating!! Yes, from reading on here and other sites over the year has made me realise that getting back to 'normal' is a slow process and that looking after yourself is very important. I am a little worried about the coming lack of sleep with the baby on the way and how that may make me feel. Hopefully all will be ok energy wise etc! Anyway, thanks again Julie, it's nice to talk and 'off-load'! Phil.
  15. Hi guys, I have just posted my own story this morning on this website. Thanks for your posts, it has made me feel a little less crazy, as just over a year has passed since I had sepsis and I am still no-where near back to the fit bloke I used to be. Although, seeing how many years after your own fight with sepsis you are still having problems doesn't fill me with joy!! Glad to still be alive though. :-)
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