Pacing

How are you all today! Got Claire in hospital now! She took herself to A & E this morning with bad pains to do with her crohns disease. They did a scan and there was no blockage but said her kidney function levels were a bit low.

Claire has felt all along the pain she was getting was probably due to her Kidneys more than the Crohn's.

Going to see her this afternoon in Hospital my daughter Steph is going to take me. My dad is in one hospital and Claire is in the other so two stops today.

Only trouble is visiting for both is between 2 and 4. So have to try and work it between the two lol.

Hope to see you all back on here soon!

Tess

Sorry about Claire, hope she recovers soon, its difficult when you are trying to visit at two different hospitals! Come November that won`t happen thankfully, when the City Hospital opens! Are things any closer to getting your Dad moved? How are things with your brothers now, have they accepted he wants to go in a home?

Well, I did something today that I can`t remember how long it is since I last did it! I put myself first! Have Laryngitis and can`t talk at all ( peaceful some would say) so didn`t visit Mum, despite having said I would go today. Just felt so tired with all the driving of the last two weeks, and didn`t really have chance to recover from the flare of the pain in my back, so gave in and stayed at home and just chilled!

Hope everyone else is ok

Linda

Sorry you have got laryngitis but at least some good came from it and you took time out for yourself. Must seem a long while since you have been able to do that.

Saw my dad this afternoon and was shocked when he told me he was going out tomorrow and back to the flat. I spoke to one of the nurses and they looked at his notes and it had been written what time carers would be going back in to see him. i said to the nurse that still didn't think he would be ok one his own all overnight. As I was talking to the nurse my brother and his partner arrived and saw me chatting with the nurse. I acknowledged him and he just went down to see my Dad. We couldn't wait any longer as needed to get to other hospital to see Claire. My brothers still believe that he is ok to go home or they would have persuaded him to go to a nursing home. He had metioned about going into one but seems like he might have had his mind changed.

It is such a shame as his ulcers have healed well and no bandages on and he has his plaster cast off his wrist. He looks so well but by the time he gets back in the flat within a week he will be looking so tired and frail again.

We saw Claire and she was doing ok with some pain relief. She has still got to have an endoscopy to check whether it could still be related to her crohn's. Claire is not leaving hospital until they have done it as she still have to wait another 5 weeks for appointment to come through. They are checking everything they can to find out what the paini is. She has had a manager from the hospital come down several times to make sure she is being looked after well. Also had lots of her colleagues popping in when bringing a patient into admissions. We were lucky to stay until 5 o clock tonight as she was waiting to have a catheter put in.

Got to go for my blood test tomorrow at 10.20 at drs and then see gp on Thursday.

Is your mum back at St Eds now Linda or still in ECH?

Tess

Tess I'm sorry to hear about Claire I hope she feels better soon and that she gets all the tests done before she leaves hospital.

Good news that your Dad is looking better. All this messing around with where he is going to live can't be helpful. I hope all goes well for you at the docs on Thursday.

Linda I hope you are feeling better and that your voice is back. Good for you, looking after yourself first. I know its hard but at times it is important that we do.

Take care.

Lizzy

Lizzy went to see Claire today and she is still waiting for a CT Scan. They are thinking it could be her kidneys more than the crohns. She can't eat anything and is only allowed fluids and has a saline drip. She is having strong pain relief through an IV as well.

Dad only went home on Monday night and last night got phone call that he had another fall. Ambulance went out to him as he couldn't get up. He was ok this time but I know if they don't get him in nursing home it will just keep happening.

Feel so tired with going hospital every day and going off to by bed soon.

Got appointment with dr tomorrow and see what my results show. Still feeling weepy for no reason. Think it is probably due to tiredness and all the stress lol.

I hope Alan has had some good news from his other interview! Linda how are you feeling now? It has been a lovely warm day here.

Wyn & Jeff hope you are both ok.

Tess

Well wasn`t feeling too bad until this morning! Was begining to think medication from Neurology Clinic was making a difference, but like you Tess am feeling a bit weepy and aprehensive but don`t know why! Hope blood tests are ok and you get your thyroid levels sorted.

Well, not said much before, but not too happy about Mum being moved around to different wards at the two hospitals. Had a loing chat with Geraldine yesterday and she would like to get Mum home ASAP because of the impact it`s all making on the dementia. That said we also need to make sure she is safe when she is alone in her flat. So Geraldine and social worker discussing it this morning.

Your poor Dad, Tess, how many falls is that now? He`s as bad as my Mum! I think this is the sort of situation that geraldine is worried about as even in St. Eds there can`t be someone with Mum all the time

Now just what you mean about all the visiting etc, have cut down to every other day now, and not at weekends. My cousin visits every night but told me the other week that that`s because he feels guilty if he doesn`t! So not really going to help me or Mum at all!! Families eh.......

Well Lizzy, still doing my online CBT course while waiting for an appointment with the clinic to see a real person about CBT. That said, now I am learning how to pace properly and make good use of my time things do seem a bit easier. Have you heard about yours yet?

Well, have bllod test this morning and then ray to his blind club meeting, so should really go and get sorted out. Take care

Linda

I hope you can get your mum back to St Eds and sorted soon! My daughter is at St Eds for several weeks doing training as a Carer! It was her first day there yesterday. She saw Geradine who hadn't seen her for a while and gave her a big hug lol.

Luckily Dad was ok after his last fall. He said he felt dizzy and fell down. He couldn't get hisself back up. So an ambulance was called out to him. He is still in his flat!

Saw doctor yesterday and said by levels had gone down and were stable now. So all my extra tiredness, pain etc. thinks is due to the fibro. He asked me if I had any worries and told him about having had my dad in hospital and now Claire. He thinks all the stress is taking its toll on my body. He gave me some new stomach tablets to take as I get so anxious when I go to the hospital and out sometimes. I have to go back to see him in 3 months for the thyroid and see how I get on with the new tablets.

Still got Claire in hospital. She went in on Sunday and has been waiting for a CT Scan on her tummy since then. They still do not no really what is causing the pain until they have done the scan. They have got her pain relief under control now. She has been having lots of visits from the other paramedics when they bring a patient to the hospital they pop in to see her.

Having a day off from the hospial today as I have been everyday all week so far. Stewart is going in to see her after work tonight. She has got some other friends visiting her.

Its good that you have cut down on seeing your mum as you need time to yourself as well. You need to think about your own health as I do.

Lizzy hope you are doing ok and hope to see you on here soon. Have you been enjoying the good weather!

We are having a barbecue at the weekend as it is my daughter's Fiance 30th birthday and Stewart's 52 birthday. Got Chris coming over from Preston and Andrew & Zoe from Nottingham for the weekend.

Chris is still trying to find a job in Manchester and has been for another interview.

The weather has been great here. Even got some sun this morning.

Tess what sort of job is Chris looking for? Alan has another interview today in Chesterfield, surely he will get a job soon.I have my back to work interview at the begining of June, next week I see the Doc soI think I will disscuss with him what he thinks. To be quite honest all I want to do a the moment is sleep.

Tess hopefully you will feel a lot better now that your bloods are begining to settle down.

Its a long wait for a CT scan. I hope she gets some answers soon.

The BBQ sounds like a good day, we are thinking about going walking on Sunday, but will wait till the day to see how I feel.

Linda how are you? A rest from visiting sounds like a good idea.So I take it your Mum is not back home yet.

Linda will it take time for the tablets to kick in from neurology or should they work straight away? I did a CBT course online about 18 months ago I managed to complete all the sections apart from the last one, as it told me I mustn't do it as I was too depressed. I have now started a five year diary to see if that will help I also do two books which involves writting answers to questions. When I go back to see doc no doubt he will explain about the councelling.

Take care.

Lizzy

I hope you get for your walk on Sunday! Where do you go walking?

Chris doesn't really mind too much what he does but not to keen on being a sales person knocking on doors. The last interview he went for was in Human Resourses as an asssitant. He would be going in meetings and helping out sending out applications etc. The job if he got it was only for a years placement but would fit in nicely if he decided to go again to try and do a year in teaching at Uni. When Chris comes home at the weekend we are going to have a chat with him and see what his options are. He did go to job centre to see about getting help with Job Seekers Allowance and the dole money. He was told he has to wait a couple of weeks until the end of his Uni finishing date.

I hope Alan gets something soon it must be a worry for you. I hope your doctor doesn't send you back to work as I know I wouldn't be able cope with going out to work. Luckily we can manage for me not to have to work. Even if I could work it wouldn't be any good as it would mess up us going away on Stewart's rest days.

I am having a nice restful day today and not going to the hospital. Been every day since Sunday so nice just to chill out and catch up a bit for the weekend.

Stewart is going to visit Claire after work.

Have a good weekend everyone!

Tess

Lizzy just heard from Claire and she has had her CT Scan. It is related to her Crohns and she has a narrowing in the small bowel. She has to stay in hospital for further tests to determine the extent and possible op. She feels better knowing it is to do with the Crohns. Not sure how long she will be in for now will just take it daily.

Linda i hope your blood test wen ok.

Jeff and Win hope you both are ok and have a good weekend.

Tess

That must be a relief for you and Claire now that she knows what she is dealing with. Will it entail a opp.?

I'm sure my Doc will be very helpful. I'm just a little concerned about what he will put on my sicknote. Mind you whatever he writes I have a feeling it will make it difficult for me to get a job in the future. My last job they didn't want to employ me because of my Lupus it took me quite a while to convince the company I was well enough to work.

I can't blame Chris not wanting to do door to door sales.

We have been driving about 15 miles away from home and then walking the footpaths. Today has been a real struggle as I am sooo tired.

Linda hope you have had a good day.

Wishing you both a good weekend.

Lizzy

I hope you feel not so tired and you will be able to go for your walk! It is not very good when companies discriminate when they know you have a chronic illness. Sometimes other people can have more time off than you! Claire has had some of that in her previous job at call centre before she started to train as a paramedic. She only worked at the call centre to get some money together to go to Africa. She went out there to for a month to help build a nursery and she even managed to climb Mount Kenya. Unfortunately before she came home she managed to end up in hospital in Nairobi with a really bad chest infection after she had been scuba diving in the water.

It is very possible that she will probably need a operation. She has not been able to eat very well and always feeling sick. I think they will do a colonoscopy first as they can see more of the bowel to see how much it has narrowed.

Take care!

Tess

Know how you feel with the tiredness, Lizzy, fell asleep at lunchtime with my yoghurt in my hand. Lol Seriosly though it`s still the thing I find hardest to cope with, but do wonder if some of the tablets are to blame partly. the ones from the neurology clinic may cause drowsiness. Will chat to GP next time I go, I think.

Its good claire knows whats wrong, but not so good she had to have an operation. I hope she gets sorted soon. How is your Dad coping, have you any news on his flat, care home etc?

Mum came home yesterday, which she was pleased about, but not sure it was the best things. I know St. Eds will give her the best possible care they can, but ECH were very lacking in communication and what level of care was needed. They told me on Mon that they were aiming for Fri discharge, I asked had they spoke with St.Eds. Had a long chat with Geraldine on Wednesday and she hadn`t heard from them for nearly a week! Had a few concerns and told me where to go at ECH to speak to the right person. Socail worker and ward did not communicate with each other or St. Eds!! I was told at 5pm thurs that she would be home at 10am Fri!! Made them change that so I could get shopping in etc. Going to have weekend off and visit Mon. Feel guilty about not going more often but ray isn`t at all well either so just have to try and share my time out.

Well sitting in sun just chilling, but need to get us some dinner now. Have a good weekend all

Linda

Know what you mean about the tiredness! Doesn't think it helps

Linda with all the driving and visiting you need to do. Good news your mum is going back to St. Eds. The hospital and social workers never seem to work together properly. Could be some of you meds making you so tired. I hope Ray is feeling better soon.

Well Dad came out of hospital on Monday and since then has had three falls.

He fell again yesterday and the paramedics gave him a choice whether to go A & E or go into interim care above the new walk in centre. He is now in interim care. I spoke to my brother and said that he isn't safe at home in his flat. He said they were both trying to sort out full time care in his flat. My dads carers are Care UK and he said they could do full time care so he could stay in his flat.

My brother said the carers would come in an do three eight hour shifts.

I have never heard of this before and didn't think the social care people could do 24 hour care. At least for now he is safe and have to see what happens now. Think Claire could be in at least another week before they sort her out.

You shouldn't feel guilty Linda about not visiting your mum all the time! You can't do it all and need time for you.

I haven't been able to see my Dad since Claire went into hospital as I have been there nearly every day!

Today is Stewart's birthday and he has gone to work to do some overtime! We are hoping to save to go to New Zealand in a couple of years to visit his brother. We are going in tonight to see Claire as it will be too late to go in the afternoon when he finishes work.

Lizzy i hope you manage to go for your walk today!

Going to go now as getting hungry and need something to eat.

Tess

When will all this hospital visiting end lol! I am so tired! Had a very busy weekend with everyone over on Saturday. Saying that was a lovely evening apart from Claire being unable to be there :cry: Was good to see Chris hadn't seen him since Easter and also Andrew & Zoe.

Poor Claire saw her today and she is getting so stressed. She can't eat a lot of heavy food at the moment because of the narrowing in small bowel. Dietician gave her some energy drinks to go in the fridge and to try and have as many as she can. When she wants one she asks the staff but it is about nearly an hour later until they get it for her. So with the time delay she is not having enough calories to build her strength up. It is terrible what is happening on her ward. She is able to have anti-sickness drug iv and pain relief iv. She wanted sickness drug while I was there today and it took them 20 minutes just to answer her buzzer. We left at four and still nothing. She text me at 5pm and said they got it but wouldnt go through properly so had to get another one. She didn't get it until 5.30. The same happens with pain relief she is in a lot of pain and has to wait about couple of hours until doctor can sign the form. It is so disgraceful. Some of the things she has seen happening on the ward to patients and being a nearly qualifed paramedic she thinks is terrible and dangerous.

Saturday evening had a phone call my Dad had another fall and was given choice to go to A and E or the new intermediate care unit. He is now in the intermediate care unit. My brothers are trying to get 24 hour care on the NHS for my dad to stay in his flat. I have never heard of anyone getting it unless it is paid for through private company. Saw my dad last night and they thought he had a water infection. He didn't look to good again.

I have to make appointment tomorrrow to go for Xray on my toes. Going to see if I can have appt in the afternoon and fit it after or before I visit Claire sometime this week. Might as well try and do it all in one go as hopefully won't take to long.

Lizzy did you get out for your walk in this lovely sunshire! Linda has your mum settled back into St Eds now! How is Ray!

Well going to catch up some reading of my newspapers now before it is time for my bed lol. :lol:

Take care.

Tess x x