Well I’m lying in a hospital bed right now raging at the poor health care from my NHS trust. The level of care I have been given all day has been terrible. Since my supapubic cathater op yesterday, I have had no power in my left leg. MS problem not sure. But back to my rant. Not once today or yesterday have I been turned in my bed. No one has even done any movement in my leg even though I have been complaining of this terrible pain, in case you ask I cannot even lift my leg. My cathater bag had over 1380mls of fluid in it at one point. 500mls is recommended emptying level. Sore now from lying in the same spot. Asked for a doctor because of the pain, and just said need to take prescribed painkillers. Doctor will say same thing. So they say. Asked me how much fluids I have been drinking. Now as someone with MS my memory is crap. They were supposed to be doing that, checking intake and output of fluid levels. Confined to my bed since yesterday, what do I do anyone?Help needed urgent. I’m a male and I have been crying typing this. BE
Feel so bad now. Had a rant at the young reg that came to see me. The poor girl didn’t know what to do 
still awake after all my meds. 150 mg lyrica 5ml of morphine the reg just gave me.My 10mg baclofen, and 50mg of amitriptyline. 2x 30/500 co-codamol and paracetamol. Bloody hell my body’s gone crazy. This should knock anyone out. 
My mind is racing. But not tired. OMG can’t unwind. BE
Sorry to hear you are having such a terrible time. for many, that cocktail of meds would knock them out no problem. I don’t know a lot about some of the meds you are on but i know how i react to morphine. Instead of making me sleepy it makes me climb the walls, feel sick, itchy… and also makes me cry!! I had morphine (lots of it) for 3.5 months while the drs decided what was wrong with me and i had an operation (appendicitis & adhesions… which had been diagnosed as being all in my head!!) I ended up feeling like i was going mad, i couldn’t speak properly and was so worried about myself. Was terrifying Once they realised i had an allergy to the meds and got it under control with drugs to counteract the side effects, i felt human again and could even sleep - even in a noisy, busy hospital and i am a light sleeper. You should not feel embarrassed about crying. You also feel frustrated as you asked for a dr and they fobbed you off. You are over tired and your operation in itself is a lot for you body to handle. Let it all out!! And if you feel you are not being provided with the correct level of care, ask to speak to your consultant. It is your body and your life - you know best. hope you got some sleep in the end, bless you.
I didn’t mean to post anon, must have ticked box without knowing… but it was me who wrote the essay about morphine.
Oh BE that sounds awful. What on earth is happening to our NHS?
How are you feeling now?
Shazzie xx
That does sound terrible
I truly hope you did get some sleep and feeling a little brighter today, or at least not so bad…
Sonia x
sounds like you having a tough time atm jsut hang in there ok try to smile i keep telling myself that also
hi be
i read ur post late last night but didnt reply cos i thought i had better calm down first. i am sad to say that i gave 10 yrs of my life to the nhs-i was a staff nurse and 2 reasons in particular made me hand my notice in-firstly i was given a row for talking with a patient instead of ripping plastic aprons off a roll and then folding them in a box, and 2nd i used 10plus wipes for cleaning a soiled butt instead of the allocated 2/3. these were not why i went into nursing!
i feel for you-i really do and i dunno how to make this a positive experience for you. shouting and complaining wont get u anywhere unfortunately. getting to talk with neuro or person in charge of the ward and u telling them honestly but calmly what it feels like to be treated like thismay help. a letter to the trust once you are home perhaps. but immediately i can only suggest getting thru 15 mins at a time. can u meditate? if not perhaps something to investigate when u r home? if u know ur bag needs emptied then ask them. working with them, being on their ‘side’ will make u feel as if u are contributing to ur own care and make u feel stronger about yourself. sometimes in hosp its very easy to slip into the patient role and lose ur own identity-ur role/expectations change and this causes distress when your needs are not made as expected.
i dunno if this will help-i hope so. you are still the same man with desires, wants and needs as u were last week but are needing a bit of extra assistance just now-find the easiest way for you, which wont be written down in any book because you are the only ‘be’ so do it ur way…
thinking of you-this time will pass and u will learn from it. ellie
As a veteran of SPC - well the last 18yrs. l can still remember being in hospital to have it done. And they connected me to a ‘stand’ that had a bag that held 2litres. l did come home in the morning. But anyone who is catheterised in hospital - it is the norm to be connected to a 2litre bag. And they should be keeping a chart of your fluid intake and measuring the out- take. Once you get home l am sure you will get on better. Six months ago, l was in an orthopaedic ward having a hip-replacement op - and l was so gratefull for having my SPC. All the other patients were catheterised- urethally - to save having to use bed-pans. l did have to keep asking them to bring me those cardboard pots to empty into.
l have never regreted having my SPC - l would hate to go back to how my life was before. Although, l would like to try the new bladder incontinence drug Betmiga.
l can’t understand why they have kept you in bed. lt is the worst thing for anyone - you need to be moved. Ask for a physio to come and give your legs a massage - keep the blood circulating - and lymph glands draining.
l am like you - no amount of morphine/codeine/paracetamol/amitriptyline/zopiclone knocks me out - l would still be wide-awake.
Now baclofen - that made me so weak that l could not use my legs - and l felt brain dead.
Thank you everyone for your kind messages. Eventually got over to sleep at 4.30 after the clocks had gone back. The care that I have now received is better after having rant with the reg. think she had words with the night staff. Feeling emotionally better after having a good old weep last night with one of the auxiliary workers. Thanks all. My MS nurse is calling with me tomorrow. Still cannot move my stupid left leg. BE
Oh dear, I feel for you.
I had an spc fitted last July. I was told to arrive at 7am and wasn`t sure if I would be kept in overnight.
Getting up early is a nightmare for me, but my carer stayed over to help, as hubby isnt at his best in the am.
Got up at 4.15am as I was afraid of sleeping in. Got into hosp at 6.45am. Was taken to a large room where each day patient was questioned by Staff nurse. I heard everything that was said…personal and private stuff!
I kept thinking it must be my turn soon. When the last person had gone for preparation prior to their operation, I was called by the actual surgeon! It was 10,30am…He went through the op and I signed the necessary papers. I needed a wee…chuff knows how I`d held on so long…being incontinent!
I had asked the Staff Nurse a few times, for a commode. I had made specific requests for a hoist, prior to this day. No hoist was apparent. I was taken behind a curtain and put into my gown and finally a hoist was brought and I had a wee…a long wee!
I was taken to my room on the ward and was extremely tired, thirsty and hungry!
At 2.15pm a porter arrived to take me to theatre. Boy was I glad to see him!
I had the op, slept and got a meal at 5.15pm…I`d fasted for 24 hours!!!
I asked why Id been required to arrive at the hospital so early, when afternoon surgery meant I couldve arrived at 11am. I was told the surgeon liked to know all his patients were in for the day!
I dont recall having my fluid levels recorded. I did have a 2 litre bag attached to my catheter.
I called for a nurse several times in the night due to pain, they had left the call button out of my reach, no-one heared me calling, as I was in a single room, down a corridor.
I was discharged at 10am.
I know we can sometimes get less than good care, but I dont think shouting or being cross with NHS staff gets us anywhere,.
I made a calm, quiet comment about the length of time I have gone un-diagnosed in neurology and I believe it went against me, due to what ensued. I dont want to talk about it here.
I am sorry you feel you`ve had bad treatment.
pollx
[quote=“BE”] Thank you everyone for your kind messages. Eventually got over to sleep at 4.30 after the clocks had gone back. The care that I have now received is better after having rant with the reg. think she had words with the night staff. Feeling emotionally better after having a good old weep last night with one of the auxiliary workers. Thanks all. My MS nurse is calling with me tomorrow. Still cannot move my stupid left leg. BE [/quote] Sorry you’ve been so upset BE but glad your now feeling better. Its a vunerable time for all patients when there in hospital, it makes me so angry when staff let patients down in this way…there’s no excuse in my book. I’m sure when you see your MS nurse tomorrow things will start to look more positive. All the best to