Finding life (almost) too hard

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AJLang

AJLang

Well-Known Member
Relationship to Diabetes
Type 1
I am finding things so difficult at the moment. I’ve started drinking spirits in the evening to try to anaesthetise myself - not good when I’m taking a cocktail of drugs including codeine.
I have so much physical pain in my body and finding all of the physio etc such hard work. Medtronic have been messing me about with my sensor orders and the closed loop pump that was working so well at the beginning is causing me so many problems now. I am so flipping tired. The pain from the facet joint issues causing pain, including referred pain and nerve pain throughout my lower body, the glaucoma and macula damage problems, the whole stupid gastroparesis thing which is getting much worse, having to rely on M having to push my wheelchair when I go out and now having problems with my left lower leg. Plus lots more issues that I haven’t said.
Don’t worry I won’t do anything stupid but I’m even close to looking at my painkillers and wanting to take away the pain and fatigue.
I will be ok. My partner is such a great support but feel like I’m less than existing rather than making the most of life.
Hopefully this is just a blip.
Sorry for putting this on here but I just needed support.
 
Sorry to hear this, sending you hugs! You were sounding so positive when you last posted.
 
Really sorry to hear you are struggling so much Amanda. It is difficult enough just managing the diabetes stuff, but with all the pain and worry over your complications and other health issues, it is totally understandable that you must feel overwhelmed and worn down by it. I imagine the damp, dark, miserable weather is not helping either. Hopefully we will get a bit of warmth and sunshine soon and that will make things a little less unbearable and lift your spirits a bit. I know I am desperately in need of that as it has been a very long, wet winter!
 
So sorry to hear this - you’re putting up with so much. Is it worth talking to your GP or consultant to see if they can help at all? Sometimes even a tiny bit of help can ease the pressure.

I wish I could suggest something more. I hope you find the brighter, warmer days help you a bit, and I really hope this is just a blip. Look after yourself. You have lots of people here who care about you xxx
 
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Awwww! Amanda @AJLang :( :( :(

So sorry to hear about the pain and tiredness you are experiencing :(

And especially how difficult some of the things that are supposed to be helping, like the physio, and the hybrid loop from Medtronic are bringing problems rather than relieving them.

Not to mention the eye problems and ongoing gastroparesis :(

Hang in there, we are rooting for you.
 
Life can be a real test at times, and fact you’ve reached out for support speaks volumes e.g. you’re stronger than you give yourself credit for. Stay sane, your partner is fantastic as you say and there will be many others that care similarly so you’re in a team already. Call someone up, grab an audiobook to distract (lots of free ones online these days, such as in the InternetArchive.com), watch some wildlife down at the park etc. Can’t comment on the cocktails but hey if it works nobody judging here! Most of all don’t judge yourself too harshly. We’re all our biggest critiques and unduly so 99% of the time. Take care.
 
Thank you everyone. I really appreciate the comments. Mood has lifted slightly Not doing great at the
Went to physio today and had a shock. I’ve had horrible problems with the back of my lower left leg for the past two months. Went for physio appointment today expecting him to suggest exercises and possibly do some massage on it. No such luck as it doesn’t appear to be muscle related. He said that a letter will go in the post tonight asking for the GP to do tests etc and try to work out what’s wrong
Ps I thought that I should clarify that the “cocktail of drugs” are medications legally prescribed by my GP but there a lot of medications!
 
Can you reach out to your gp for other practical or mental support?
Locally to me there’s a whole load of community charities that can help with a number of things including loaning of equipment like scooters or electric chairs.
My MIL has a number of health and mental issues and as well as a social worker who is amazing they also offered her PA.
Keep your chin up.
We are here for you.
 
PhoebeC said:
Can you reach out to your gp for other practical or mental support?
Locally to me there’s a whole load of community charities that can help with a number of things including loaning of equipment like scooters or electric chairs.
My MIL has a number of health and mental issues and as well as a social worker who is amazing they also offered her PA.
Keep your chin up.
We are here for you.
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Thank you Phoebe. Unfortunately GP is touch and go with regard to help but I have tried with them before. I've also tried CBT several times and have had problems when trying any anti depressants.
Thank you for the suggestions. I have an electric chair for where we're actutally in chairs but the paths round here are absolutely useless for using it on. I can't go out on my own for various reasons which I won't elaborate here but mainly relate to the effects of silent migraines that can affect my ability to function without any warning.
I have tried my best to join community groups before as the silent migraines can attack at any minute and my fatigue levels can be awful again I haven't been able to manage them. But I have tried 🙂 Lots 🙂
I've discussed contacting the council before to get a social worker but my partner is not keen on somebody else getting involved. He prefers to do the things himself - which is a heck of a lot of pressure for him when he also works full-time in a highly stressful job. Fortunately he's on a year's sabbatical at the moment to support but has said several times that until he'd been several weeks into the sabbatical he hadn't realised how bad my health is because I would often send him positive texts about me and not mention the other stuff.
I will be ok. Just up and down days and M is being marvellous at picking me up when I feel down - it's just that I sometimes try to hid how I'm feeling from him so that because I feel guilty. He hasn't made me feel guilty at all but when we met I was a bright ambitious academic who then got the highest pass mark that you can for a PhD, having my own home and walking Susie dog lots as well as going to the gym. Now I can't get out of the house on my own, unable to concentrate for long. I do like crafting but tend to have to use children's kits because otherwise I find others too difficult. Oh well c'est la vie. I need to stay positive.
 
Just for reference, although I'm sure that nobody really wants to know I have
Type 1 diabetes 53 years
Facet joint arthropathy in cervical and lumbar areas
Arthritis in my right hip for over ten years
Moderate scoliosis which wasn't pick up until I was an adult although in retrospect I realise there were signs that it was there when i was younger
Silent migraines which have all kinds of weird symptoms including suddenly not being able to move a limb or talk for a few minutes, dizziness etc
Relatively recently developed neurosenisorial (sp) hearing loss that requires hearing aids in both years
Gastroparesis - which severely affects how and when I can eat
Glaucoma for over 25 years which has affected my vision
A hemi retinal vein occlusion when was 40 which took away any useful vision in my left eye and subsequently finding out from a consultant at Moorfields that might right eye is weak which doesn't help things
Retinopathy although not too bad
Chronic fatigue syndrome for 12 years which has been confirmed by both a rheumatologist and a neurologist.
Neuropathy

I think that covers everything 🙂 🙂 🙂
Thank goodness that I'm still allowed to drink wine🙂
It's all fun being 55
and honestly I am cheerful most of the time
 
AJLang said:
Just for reference, although I'm sure that nobody really wants to know I have
Type 1 diabetes 53 years
Facet joint arthropathy in cervical and lumbar areas
Arthritis in my right hip for over ten years
Moderate scoliosis which wasn't pick up until I was an adult although in retrospect I realise there were signs that it was there when i was younger
Silent migraines which have all kinds of weird symptoms including suddenly not being able to move a limb or talk for a few minutes, dizziness etc
Relatively recently developed neurosenisorial (sp) hearing loss that requires hearing aids in both years
Gastroparesis - which severely affects how and when I can eat
Glaucoma for over 25 years which has affected my vision
A hemi retinal vein occlusion when was 40 which took away any useful vision in my left eye and subsequently finding out from a consultant at Moorfields that might right eye is weak which doesn't help things
Retinopathy although not too bad
Chronic fatigue syndrome for 12 years which has been confirmed by both a rheumatologist and a neurologist.
Neuropathy

I think that covers everything 🙂 🙂 🙂
Thank goodness that I'm still allowed to drink wine🙂
It's all fun being 55
and honestly I am cheerful most of the time
Click to expand...

You have so much to deal with @AJLang , it isn't surprising it all gets you down but pleased to hear your otherwise a cheerful person.
 
I’m so sorry you’re having a tough time Amanda @AJLang . That is a lot of plates to keep spinning. Diabetes on its own is hard enough.

I hope the issues with your hcl can be sorted so it’s one less thing to worry about.

Wishing you well. I’m glad you still enjoy a glass of wine. 🙂
 
Something Nina Warhurst (BBC breakfast) said which made sense when she and her sisters decided to put her Dad who had dementia in a care home was that because the 'caring ' was then being done by others they could be the daughters not the carers and enjoy time as a daughter with their Father and give him the attention rather than time being taken up with the day to day caring.
I wonder if by accepting more help your husband would have more time to do the good things with you.
 
I’m so sorry you’re having a tough time. Chronic illnesses are so difficult because you don’t get time off and chronic pain is so wearing. I don’t know what meds you’re on but as you’re dealing with chronic fatigue and pain has the gp tried you on gabapentin or any of those meds? They are used for things like fibromyalgia but can also help migraines. The downside is you can’t drink alcohol if you’re on them.
 
I'm afraid I can't offer much in the way of wisdom or guidance but I did want to say that you sound like a lovely strong person and good on you for posting here and staying positive (when you can!)
 
I am sorry to hear about all your problems. I cannot offer anything really other than sympathy. I have two friends who are struggling to walk due to pain and I know how bad it is for them but it is nothing compared to what you have to put up with.
 
Thank you very much everyone.
@Leadinglights I showed your post , because I appreciated your suggestion, to my partner. But he is certain that he not want to get any other carers involved and we do manage to do a lot of fun things.
I've felt a lot more positive the last few days, I think the sun has helped. For the first time we had a trip to a food pantry in the next town on Wednesday. It was a lovely experience and the food is great. M started making home made wine yesterday and I've managed to make some funky Easter chick decorations today so it's good that I'm now back in a mood where I can focus on the good things xx
 
Thebearcametoo said:
I’m so sorry you’re having a tough time. Chronic illnesses are so difficult because you don’t get time off and chronic pain is so wearing. I don’t know what meds you’re on but as you’re dealing with chronic fatigue and pain has the gp tried you on gabapentin or any of those meds? They are used for things like fibromyalgia but can also help migraines. The downside is you can’t drink alcohol if you’re on them.
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Thank for for the suggestion. I've been on amitriptylene for six years - firstly for the facet joint problems and then also as a migraine preventative. They help a little because a few times I've tried to carefully withdraw from it the problems have got worse. My neurologist asked me to try a higher dose but when I did I felt like a complete zombie.
I'm always honest with doctors that I like my wine in the evenings 🙂
 
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