Type 2 Life

[tina_marie]

Will post and let you know what he gets put on. Although it will take another two weeks before he will start any new meds . Totally crazy I know .

 

[JohnnyBaker87]

Ron's back at pain clinic in Monday. Hope the nurse gives him something to help him sleep. At the moment I'm going to bed in the early hours and he's still awake in pain. He gets up early as he's not able to relax in bed . Just wish i knew what has caused this pain. It is all through his body .

Oh, bless Lovely Ron! I'm praying that the medical professionals involved in his treatment can help him to attain a better quality of life, and one where he is completely and abundantly exonerated from his pain. He's a lovely, lovely, lovely man. I'm praying for you, too, Tina, for strength and I thank my eternal God that I've got your friendship in this fabulous site. Hugs to you both in abundance, from Johnny Baker, a sufferer of Asperger Syndrome, and a Jehovah's Witness Bible Study Student and prospective unbaptized publisher.
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[tina_marie]

Back from pain clinic . Nurse is putting him on baclofen at night , to run along side the Amatryptyline hopefully this will give him a better nights sleep. She has suggested Ron increase his dihydrocodeine to two at night . Not sure if he will still be alternating them with tramadol as Ron told her that they weren't making much of a difference , just taking the edge off. She also suggested a medication for his moods but not sure if that will be prescribed , we will have to wait and see what she puts in writing to our gp. Also we found out that people with a heart condition such as Ron should take Amatryptyline with caution , not that we've ever been told that until now . Yet it was the nurse at pain clinic who put Ron on it in the first place .

 

[ickihun]

Back from pain clinic . Nurse is putting him on baclofen at night , to run along side the Amatryptyline hopefully this will give him a better nights sleep. She has suggested Ron increase his dihydrocodeine to two at night . Not sure if he will still be alternating them with tramadol as Ron told her that they weren't making much of a difference , just taking the edge off. She also suggested a medication for his moods but not sure if that will be prescribed , we will have to wait and see what she puts in writing to our gp. Also we found out that people with a heart condition such as Ron should take Amatryptyline with caution , not that we've ever been told that until now . Yet it was the nurse at pain clinic who put Ron on it in the first place .

I'm glad some help to Ron.
Tell him my new cassarole dish arrived today. I cannot lift it. I didn't check it's weight before ordering but perfect size for my oven and family needs. Just I cannot use it, just supervise. Soooooo frustrating.
My back was in agony throughout the night and this morning. I was crying with pain. It's not til 2nd set of tramadol is in my system til less pain.
Not sure if I'll get pain clinic as hoping op in few months. I will ask gp if tramadol stops working more.
Do you think I'd be wise to get pain clinic help before op? If they'll give me. I'm not sure as they are hoping my op resolves some pain if not all, I get the impression.

 

[tina_marie]

I'm glad some help to Ron.
Tell him my new cassarole dish arrived today. I cannot lift it. I didn't check it's weight before ordering but perfect size for my oven and family needs. Just I cannot use it, just supervise. Soooooo frustrating.
My back was in agony throughout the night and this morning. I was crying with pain. It's not til 2nd set of tramadol is in my system til less pain.
Not sure if I'll get pain clinic as hoping op in few months. I will ask gp if tramadol stops working more.
Do you think I'd be wise to get pain clinic help before op? If they'll give me. I'm not sure as they are hoping my op resolves some pain if not all, I get the impression.

Ron was told he will never be pain free . Even with your op you may or may not resolve your back pain issues , so I would ask for help from pain clinic . They have told Ron that next stage will be morphine but nurse said even with that comes problems . They look at long term effects of medication on the body not the relief it gives now . They can also give advice on activities to do and some not to do . I don't trust Ron in the kitchen anyway . I'm just a bit annoyed he wasn't told about amitrptyline and the heart before now .

 

[ickihun]

Ron was told he will never be pain free . Even with your op you may or may not resolve your back pain issues , so I would ask for help from pain clinic . They have told Ron that next stage will be morphine but nurse said even with that comes problems . They look at long term effects of medication on the body not the relief it gives now . They can also give advice on activities to do and some not to do . I don't trust Ron in the kitchen anyway . I'm just a bit annoyed he wasn't told about amitrptyline and the heart before now .

Me too. I wish I'd known to have told you. What effect does it have?

 

[tina_marie]

Me too. I wish I'd known to have told you. What effect does it have?

She didn't actually say but I guess it has something to do with the rhythm of the heart . Ron did say at night he can hear his heart beating really fast . I just wish that they would take a closer look at what they are prescribing and people's medical conditions . It's now making me question all his medications . It's all very well reading the leaflet that meds come with but sometimes they don't tell you all you need to know , so you trust the medical staff that prescribe it to you in the first place .

 

[tina_marie]

Ron started on the baclofen 10mgs last night as well as taking the Amatryptyline 50mgs as well . Pleased to say he has slept really well for the first time in months , although this morning he's saying his legs really hurt especially when walking . Fingers crossed it will ease of .

 

[tina_marie]

Just thought I'd give you an update on Ron. Today he received a letter about his referral to Derby hospital. Next week they will be ringing him to talk about the next step of the referal to the chronic fatigue syndrome clinic . Thought this to be a bit weird but I guess this is how they do things there .

 

[JohnnyBaker87]

Good Afternoon, my friends, @ickihun, @13lizanne, @debrasue, @eldergarth, @tina_marie, and @TooManyCrisps,

I'm posting to let you know that I'm now 59 Days Quit from tobacco smoking and tomorrow I'll be a whole 60 Days Quit which is exactly two months of abstinence from any tobacco misuse products. I'm also doing a gym tryout at Brixton Recreation Centre with a qualified fitness instructor this coming Friday at 3pm. And I've just started a supported learning newsletter writing course for people on the autism spectrum/learning disabilities and this coming Thursday is session 2.

So far today I had 2 slices of cheese on toast for my breakfast and two slices of cheese on toast just now for my lunch. My blood glucose is a very good 6.8 mmol just now even though I forgot to take my morning meds and Lixisenatide GLP-1 injection.

 

[debrasue]

Good Afternoon, my friends, @ickihun, @13lizanne, @debrasue, @eldergarth, @tina_marie, and @TooManyCrisps,

I'm posting to let you know that I'm now 59 Days Quit from tobacco smoking and tomorrow I'll be a whole 60 Days Quit which is exactly two months of abstinence from any tobacco misuse products. I'm also doing a gym tryout at Brixton Recreation Centre with a qualified fitness instructor this coming Friday at 3pm. And I've just started a supported learning newsletter writing course for people on the autism spectrum/learning disabilities and this coming Thursday is session 2.

So far today I had 2 slices of cheese on toast for my breakfast and two slices of cheese on toast just now for my lunch. My blood glucose is a very good 6.8 mmol just now even though I forgot to take my morning meds and Lixisenatide GLP-1 injection.

Well done, Johnny - it's good to see you are on such great form!

 

[13lizanne]

That's a terrific achievement @JohnnyBaker12021970 very well done on quitting smoking. Lots of good things for you to look forward to as a reward!

 

[ickihun]

Well I'm awaiting my bariatric surgeons decision by letter this week.
Fingers crossed it will be which one I want too.

Scary but exciting.

I can see me skipping down the road thereafter.
Well bulging discs aside.

This was me 30weeks ago.

I think I'm losing my enthusiasm but not my conviction.

I think I've waited long enough to know whether I'll see a surgeon or not. I hope I hear in february whether I've passed tier3 stage. I think they waiting for more weight loss.....me too.

 

[tina_marie]

How many stages are there

 

[ickihun]

Will post and let you know what he gets put on. Although it will take another two weeks before he will start any new meds . Totally crazy I know .

Remind me has Ron been given tramadol to start this week? I'm delighted your roasts are good medicine for Ron. You look after him superbly. A lovely companion too. @eldergarth is a very lucky man. And he will keep you cherished and protected.(When he's not in agony, bless him.)
I know it's hard when he cannot cuddle/squash you because of pain and discomfort but he would more, if he could. (I would with Mr ickihun). I have to reassure him why and use more words to explain how I feel to compensate. Actions always speak louder than words but not when in pain to be touched. It must be hard for him as most men are not the best in explaining their feelings in replacement or not.
I hope you both aren't inconvenienced by the ice.
Mr ickihun saved me twice from going on my walnut cracking bum. (I was so tense in case I fell. The penny has dropped why I need a relaxant. Constantly expecting to fall when moving. I really miss tramadol for that. Not sure if codeine as good. I'm expecting codeine not to work anytime due to tramadol's effectiveness gone. I must try and just 'keep taking the tablets' and stop worrying. Easier said than done.

I hope @debrasue and @Liam1955 are far more recovered and feeling enthusiastic about spring and summer being guaranteed in a few weeks?

Well done @JohnnyBaker12021970 you are an absolute star! I'm so proud of you.

I hope all we type2s are ok this winter and have good emotional support. Admire you all. You're brilliant.
We type2s do appreciate the efforts over winter, every winter.

 

[ickihun]

How many stages are there

Tier 4 next which is op medical preparations and then op. (Surgeon's medical instruction/actions related).
Still stuck in tier 3 which is weight loss training and assessments for suitability (psychology etc.) and weight loss team specific individual needs to go forward (e.g receive more eatwell training). Tier 2 was being referred by appropriate medic for the op and being put forward for acceptance on tier3 pathway.
I found this..
Tiers of weight management services. ... Definitions vary locally but usually tier 1 covers universal services (such as health promotion or primary care); tier 2 covers lifestyle interventions; tier 3 covers specialist weight management services; and tier 4 covers bariatric surgery.

 

[debrasue]

Remind me has Ron been given tramadol to start this week? I'm delighted your roasts are good medicine for Ron. You look after him superbly. A lovely companion too. @eldergarth is a very lucky man. And he will keep you cherished and protected.(When he's not in agony, bless him.)
I know it's hard when he cannot cuddle/squash you because of pain and discomfort but he would more, if he could. (I would with Mr ickihun). I have to reassure him why and use more words to explain how I feel to compensate. Actions always speak louder than words but not when in pain to be touched. It must be hard for him as most men are not the best in explaining their feelings in replacement or not.
I hope you both aren't inconvenienced by the ice.
Mr ickihun saved me twice from going on my walnut cracking bum. (I was so tense in case I fell. The penny has dropped why I need a relaxant. Constantly expecting to fall when moving. I really miss tramadol for that. Not sure if codeine as good. I'm expecting codeine not to work anytime due to tramadol's effectiveness gone. I must try and just 'keep taking the tablets' and stop worrying. Easier said than done.

I hope @debrasue and @Liam1955 are far more recovered and feeling enthusiastic about spring and summer being guaranteed in a few weeks?

Well done @JohnnyBaker12021970 you are an absolute star! I'm so proud of you.

I hope all we type2s are ok this winter and have good emotional support. Admire you all. You're brilliant.
We type2s do appreciate the efforts over winter, every winter.

Hi, Vicky!

Thanks for thinking about me - I’m still in hunker-down mode, pinned to the wheelchair for another five weeks, but I am certainly feeling more positive than I was. Fingers crossed the operation has worked and the bones are knitting together as they should. I’ll find out in a few weeks.

Can I just offer a word of caution about the opiates, though... I had to take increasing quantities of codeine, tramadol and OxyContin for a year prior to my op, just to cope with the pain. After the op, because the pain was negligible, I stopped taking the meds. Just stopped them. That turned out to be a big mistake.

I went through about three weeks of pure hell - excruciating pain everywhere and constant, blinding headaches; fever and sweating one minute, chills and shaking the next; dreadful upset tummy; massive mood swings; black depression and suicidal thoughts; the inability to sleep and horrible nightmares when I did manage to drop off; nausea, vomiting and unable to eat (I lost almost a stone in three weeks); episodes of uncontrollable rage and paranoia; unable to stop crying; exhaustion. The list went on and on, and I had no idea what was happening to me.

It turned out that, because the meds were more or less doing the job they were supposed to during that year by keeping the pain in check, it never occurred to me to think about the other effects they were having on me. I had no idea that I was completely addicted to them - I don’t consider myself to have a particularly addictive personality and there were no symptoms at all until I stopped taking them.

So, of course, I’m not suggesting you stop taking or limit your meds - you’re taking them because you need them right now. But just be aware that they will almost certainly be having other effects on you, and don’t simply stop taking them like I did if you don’t need them any longer after your op.

The best way to do it is to discuss a strategy in advance with your medical team for slowly coming off them. I didn’t do that, because by the time I realised what was going on, I had already gone “cold turkey” for over three weeks, so there was no way I was going to start taking them again and reduce them slowly. But I could have saved myself three or four weeks of sheer hell if I had known about it beforehand.

Please understand that I’m not trying to alarm you, sweetheart - I just hope that I can save you some potential future grief by sharing my experiences.

So, yes - spring, summer and a brighter future? Bring it on!

Big hugs xxx

 

[ickihun]

Hi, Vicky!

Thanks for thinking about me - I’m still in hunker-down mode, pinned to the wheelchair for another five weeks, but I am certainly feeling more positive than I was. Fingers crossed the operation has worked and the bones are knitting together as they should. I’ll find out in a few weeks.

Can I just offer a word of caution about the opiates, though... I had to take increasing quantities of codeine, tramadol and OxyContin for a year prior to my op, just to cope with the pain. After the op, because the pain was negligible, I stopped taking the meds. Just stopped them. That turned out to be a big mistake.

I went through about three weeks of pure hell - excruciating pain everywhere and constant, blinding headaches; fever and sweating one minute, chills and shaking the next; dreadful upset tummy; massive mood swings; black depression and suicidal thoughts; the inability to sleep and horrible nightmares when I did manage to drop off; nausea, vomiting and unable to eat (I lost almost a stone in three weeks); episodes of uncontrollable rage and paranoia; unable to stop crying; exhaustion. The list went on and on, and I had no idea what was happening to me.

It turned out that, because the meds were more or less doing the job they were supposed to during that year by keeping the pain in check, it never occurred to me to think about the other effects they were having on me. I had no idea that I was completely addicted to them - I don’t consider myself to have a particularly addictive personality and there were no symptoms at all until I stopped taking them.

So, of course, I’m not suggesting you stop taking or limit your meds - you’re taking them because you need them right now. But just be aware that they will almost certainly be having other effects on you, and don’t simply stop taking them like I did if you don’t need them any longer after your op.

The best way to do it is to discuss a strategy in advance with your medical team for slowly coming off them. I didn’t do that, because by the time I realised what was going on, I had already gone “cold turkey” for over three weeks, so there was no way I was going to start taking them again and reduce them slowly. But I could have saved myself three or four weeks of sheer hell if I had known about it beforehand.

Please understand that I’m not trying to alarm you, sweetheart - I just hope that I can save you some potential future grief by sharing my experiences.

So, yes - spring, summer and a brighter future? Bring it on!

Big hugs xxx

I'm pleased you had your op. You're a great lady who I admire greatly. I will take your advice. My GP loves seeing me and Mr ickihun anyway. Ha ha I hope he does. I hope that helps me go to him when even a sniff or what your suggesting. Fingers crossed.
It would be very very dangerous for me to have all that upset in front of Mr ickihun, he wouldn't react well after his emotional scaring! I'll ensure I emphasize this if and when I see my surgeon too. Big reports of dependency after bariatric surgery as some replacing food addition for med addition. Gulp! Articles advising blocks done in operating theatres instead of addictive drugs which are far far cheaper. Some are using alcohol instead of food too.
I think many lose their perception of what kind of pains and aches are normal without opiates. Some..not all, are diagnosed with fibromyalgia as its that bad.
I am listening, for sure and I hugely appreciate your experience and wisdom.
Argh!!!! All to save money!!!!!

I hope it won't hit me like lead in hospital either, I hope they are wise to people who cannot have pain meds just stopped?

 

[tina_marie]

Ron and I went to pain clinic a few weeks ago , and there the nurse said about long term affects of opiates . What @debrasue has said it so true . Ron has already told the nurse that he no longer has any appetite, plus he was told that she wouldn't be recommending any of the stronger ones like morphine because it carries it's own serious problems . Ron has to be weaned of amatryptyline because to just stop it would cause him to suffer from side effects . She has however written to gp to say she wants Ron to carry on with dihydrocodeine and tramadol rotation every 4 months. She will see him again in April. It's not giving much relief from pain and nurse said its as good as he's going to get. To be in constant pain does take its toll , lack of sleep being the Main one , again he was up at 2am. Fingers crossed for tomorrow's phone call from Derby hospital.

 

[debrasue]

I'm pleased you had your op. You're a great lady who I admire greatly. I will take your advice. My GP loves seeing me and Mr ickihun anyway. Ha ha I hope he does. I hope that helps me go to him when even a sniff or what your suggesting. Fingers crossed.
It would be very very dangerous for me to have all that upset in front of Mr ickihun, he wouldn't react well after his emotional scaring! I'll ensure I emphasize this if and when I see my surgeon too. Big reports of dependency after bariatric surgery as some replacing food addition for med addition. Gulp! Articles advising blocks done in operating theatres instead of addictive drugs which are far far cheaper. Some are using alcohol instead of food too.
I think many lose their perception of what kind of pains and aches are normal without opiates. Some..not all, are diagnosed with fibromyalgia as its that bad.
I am listening, for sure and I hugely appreciate your experience and wisdom.
Argh!!!! All to save money!!!!!

I hope it won't hit me like lead in hospital either, I hope they are wise to people who cannot have pain meds just stopped?

Yes, I'm sure the hospital will be aware of the problem. It's just unfortunate that neither the GPs, the hospital or the consultants rarely see it as their job to advise and counsel patients on this issue in advance, rather than waiting for it to become a problem and then shunting people off to psychologists or psychiatrists. Prevention is always better than cure, in my book.