Not posted for a while as been feeling really bad, but need to let of steam and maybe get a bit of feedback. Feel so ill am convinced I am dying. My medication is limited to levothyroxine for hypothyroidism as I can't tolerate other medications, other than occasional paracetamol, diazepam or asprin. Have been pushing my self and struggling to keep the house running, as I can't settle to just watch tv, and have managed so far with a little help from my DH. Probably pushed too hard and am now paying for it. The problem is he has worsening dementia and is practically immobile, plus COPD. He has other issues as well and is constantly telling me how ill he feels, and constantly asking me questions, half of which I don't have the answers to and the other answers he forgets and keeps repeatedly asking. I feel guilty that I can't help him more and angry that he can't help me more or help or understand how I am feeling. He just keeps saying go to the doctor. or get me a doctor's appointment, when he knows it is practically impossible at the moment, and futile anyway. The last two appointments we have both had have been useless. I have had blood tests and told everything is ok but to book a thyroid check in 3 months. They don't listen to how I am feeling just go by blood results. I feel they should be delving further but once you get the fibro label everything seems to be blamed on that ! He has had tests (he had blood blotches come up on his arm) doc says not to be alarmed but will contact if necessary to be referred.That was 3 weeks ago and heard nothing since. We have just had a four days coach break away with his brother and wife and to be honest we have enjoyed it, although I had reservations about going, due to my health (which no one ever seems to consider) , and the stress involved, as because I look relatively OK no one accepts there is anything wrong with me., only DH. Obviously I try to keep up a front as no one wants a dampner on holiday and wonder ifwhat I am feeling now is repercussions. Also my daughters and their DHS have health issues so they have enough on their plates to deal with us as well, hence my rant on here as I have no one else to talk to or to ask for support, so thank you for listening and any feedback would be great. xx
Need a listening ear: Not posted for a... - Fibromyalgia Acti...
Need a listening ear
Have you got new symptoms then?
I find doctors hard enough at the best of times but I get very anxious about phone calls so combining the two is a nightmare for me. Our surgery hasn't had face to face since before the pandemic.
I've had institial cystitus for over 3 years I can only sleep for 45 minutes bursts without having to get up to wee, even more often during the day. When I phoned the surgery they said there was nothing they could do. I've got 2 young kids and struggle with them and the general running of a house/life. I got so desperate I phoned them in tears and said I can't do this for the rest of my life, I'm so tired. The doctors laughed and said it won't be for the rest of my life and prescribed me a drug which is starting to help with the pain, and very slowly with the sleep. But you wonder why did they let me suffer all that time? 3 years of hardly any sleep with all the fibro and other conditions I have trying to look after a 3 and 7 year old.
My parents can't help because my mother is immuno suppressed and like you say there's no help, it's a lonely place.
When I phoned the 2nd time they did full bloods which came back as normal and no further action required. I had to convince the receptionist that just bc the bloods came back normal further action was still required bc I was getting suicidal, only then did I get to speak to a doctor who prescribed the drug I'm on now.
I guess what I'm trying to say is that I really empathize with you and doctors seem to need a lot of pushing before they are willing to help! Sorry for the long post.
My brother has interstitial cystitis (diagnosed as a teenager now in mid 40s). He has an infusion every few months and is on tablets. They do help (not a cure). He is under a specialist at the hospital (not sure which one but assume urology?) Have you been referred to them? If not, then push for that in the first instance.
The GP said if the pills don't work they'll send me urology and they may use Botox. I've had Botox for migraines which worked pretty well just worried about how exactly they get botox in my bladder eeek!
I've had problems with my bladder from the age of about 12 and I'm in my mid 40s now, but it's got a lot worse lately. It's like being pregnant again, I had to get up every 40 minutes to wee throughout the night for both pregnancies. Its exhausting, but ive got so many other things wrong with me, theyre all chronic and all painfull and all have no end in sight.
Thank you for the info!
That's my bro! But the treatment has helped (I think he has an infusion into his bladder which calms the nerves down - catheter which they give you some kind of local anasthetic so that it isn't that uncomfortable).
That's why I was assuming I'd have it for life, everything else I've had has never left me. It's surprising how my body never seems to learn or adapt to my inability to cope with stimulus. I'm an anxious person but you'd think that after all this time the body would get desensitized to this state, instead it just finds a different body part to make dysfunctional!
Strange isn't it! I'm the same way. I have found that antihistamines help me (I think alot of my body's reaction is histamine production from mast cells) but of course you'd need to check it doesn't interfere with any existing meds. I have to take the 'old style' that can make you drowsy - I take piriton but it does help me. Maybe it is the placebo effect but honestly, if it works I couldn't care less if it is all in my head!!! However, there is lots of evidence about mast cell disorders so it migth be something worth investigating?
Hi Catoo. Thanks for responding. Knowing someone understands is a big help. I am sorry you are suffering two and send you hugs and best wishes it must be so difficult with two young children. Stay safe. xx
I completely agree with everything Hidden said. Maybe its time to look into getting a carer to help. It sounds like you will have to think about a home help sooner rather than later. Why struggle till later.
If it was me I would be discussing your husbands health and care with the GP now and see what help is available to help you both.
A little help now I'm sure would ease your burden if work and worry. Which I feel sure would help you feel a little better and more able to cope in general. Maybe have a word with social sevices see if they can put you intouch with those who can help xx
Hi shell, my advice is as the others please don’t leave this until there is an emergency and you will both end up in hospital, when I looked after my Mum, I was taken ill and ended up having to have a blood transfusion, and there was no one to look after her so she had to go into care until i recovered, thankfully when she came home I managed to get respite care for her for me to have a break and a day centre once or twice a week, so in a way it turned out to be a good thing, please sort this out with your Dr, and social worker now, So glad you managed to get away for a break though👍
Morning ShelWhitt - I am so sorry to read of your current struggle. I won’t try to add to some of the wonderful suggestions already given.All I can say, is myself and hubby have been going through a very similar scenario. Although our circumstances and health issues differ, the similarities between our situations are quite considerable.
My DH (am I right in thinking you refer to your husband with this abbreviation?), have health issue, physical and MH for him and MH (atm) for me.
He has had ME/fibro’ for many years.
I feel lockdown has a lot to do with the struggles that you, I and many others are experiencing. It’s as though many of us feel we have ‘lost’ 18months of our lives; we are re-evaluating our priorities and our potential futures and this is causing friction in relationships, within families and our circle of friends. Not everyone is going to be on the same page and therefore we have to employ bargaining/negotiation strategies.
This I know does not address the issue with your frustration with your doctor’s surgery.
Having had to wait 3 weeks to speak with my Gp recently, I found the lack of support detrimental to my mental health.
I was able to articulate this, via an online 3-consult form, and although still some delay/frustration and poor advice, eventually we have the support and care we need.
If you have a compassionate receptionist within the surgery, I would suggest making contact.
I think receptionists are now referred to as care path evaluators, (not that specific title, but something like that). In other words, they are partially acting as triage for the doctors.
So please, take a deep breath, consider taking a pen and paper and make notes of what you want to put across. It may well vary from practice to practice, but I found the e-consult form very thorough. Initially it felt like a waste of time as I received a text from a doc, saying to cut down one of my meds and speak to the MH clinician when I had my phone consultation that had been booked with a two week wait.
I was not happy, I phoned the surgery again, waited on hold for about half hour, thank goodness for speaker phone, at lease I could get on with other things whilst waiting. Asked for a GP call, but please NOT the one who had sent a fairly dismissive text in response to my e-consult request form, I said I had felt dismissed and that either the doc had not read my form, or (worst case), he had no compassion. I added that I do understand that everyone within the NHS was under huge pressure and therefore I had to give leeway but also I did need help.
Remember to be honest but respectful and most of all stay as calm as you can.
We would all do well to remember to #bekind . Everyone has suffered to some degree or other and if we could only employ compassion and kindness, along with assertiveness, then we will ALL get through this. I wish you the very best and hope for a good outcome for you and DH and that you get all the help and support you need. ❤️
Thanks Wanting change. I hear what you are saying and it is the sheer frustration and stress with trying to get anything done, or anyone to listen that is the problem. We are mudding along relatively OK on a practical day to day level so I don't think social workers are the answer. It is the not being able to to get face to face doctor appointments, constant waiting for hours on the phone; cancelled appointments and finally getting one with a new doctor and trying to explain our current situation and complex problems before getting to the reason for ringing, and still not getting satisfaction. Until lockdown we could usually manage eventually to see the same doctor who at least was abreast of our situation and we felt any new problem was taken in context. DH 's dementia is worsening. He had a dementia assessment about 3 months ago, and I discussed changing his medication. (This appointment had already been postponed for almost six months) He has had his medication changed before but it didn't suit and he reverted back. on his doctor's advice. This regular doctor of 20+ years has now retired, and he has been reluctant to see a new one, which hasn't been a problem until now. As he was scheduled for a general assessment at the local surgery, I said I would discuss it with them before doing anything, and then I would make an appointment with a doctor and see what he advised. Long story short. The upcoming assessment was postponed for two weeks and then cancelled altogether as apparently the nurse has left. End of story. No assessment. I then made an appointment with a' new' doctor, as DH had blood blotches coming up on his arms, and obviously I needed to discuss his current situation. Chronically ill with multiple problems, not been seen by a doctor for two years. Thought it was necessary. Outcome. Explained to 'new' doc, who listened, or so I thought. Asked me what I wanted to do, when I was wanting guidance from him. Told to make another appointment for bloods to be taken. Did that. Two weeks later he rang to say noting to worry about, if haematologist contacted him he would contact us. No mention of DH's medication or anything else and as I was taken off guard with the phone call and not feeling well myself, I let him go, so back to square one. and we are still there. The same with me. Fibromyalgia in constant flair, and underactive thyroid been a constant problem now for over two years. Doc tinkering with dosage of medication but still feeling really ill, so paid for a private blood test as I don't think they are being thorough enough, but I was told they are doing whatever testing is necessary. Private test came back saying I have Hashimotos; B12 is borderline and various other vitamins need checking. My doc not interested. Will not acknowledge any other tests than NHS, and they say things are OK. I feel I'm between a rock and a hard place. So what with that and having to pay privately last year to have a skin cancer removed from my scalp, which the doc has been treating for 2 years, as excema, you may understand where my frustration is coming from. It is really someone on my side, willing to fight mine and my husbands corner, that is the problem. I am exhausted and despondent and do not have the energy or the will to continue fighting for every little thing as well as caring for DH and dealing with my own issue. We are both on short fuses which isn't helping either of us. Unfortunately, I resent the responsibility falling on me when I am equally as sick as he is and I don't think those sort of people actually exist. They are all employed by the NHS and stick rigidly to the guidelines, They need to , for fear of upsetting the apple cart and appearing to be critical. We are getting constant messages on facebook from our local health centre, asking not to upset our local Staff as they will not take abuse and are doing their best, which I understand, but what we are not told is what ill people are supposed to do when they can't get the service they need.Sorry for the rant and thanks for listening.
ShelWhitt - catching up this morning. I can absolutely relate to what you are saying. Since my earlier response to you, things have continued to be difficult for us, a rollercoaster of calm and then a huge storm out of the blue. Yesterday brought the latest storm, which resulted in my calling an ambulance to attend to my husband. I had tried 111, but could not get through. The stars must have aligned or something crazy like that, because not only did I get straight through to emergency services, but following the assessment made on that call, an ambulance arrived within 1/2 hour! A but different to the 9 hr wait last week. I hated having to resort to 999, but the situation was dire and my husband, although semi-conscious was incoherent and he was unable to move. Like yourself, cutting to long story short: after taking recent ‘history’ leading to the call out and carrying out physical assessment including ecg… DH was deemed physically ‘fit’, but he was experiencing a full blown M.E. Relapse and needed to rest! If necessary with short term help of sleeping pills.
I had put his exhaustion down to stress overload, whereas the stress overload had actually triggered the worst M.E. Relapse I had ever seen.
So, today - having slept all through, (him, not me - I got 3 hrs sleep, just about my average over last several weeks.
Bearing in mind that you are still in a battle to even get heard - have you considered contacting PAls for advice/support?
nhs.uk/nhs-services/hospita...
May be worth getting in touch.
Wishing you all the very best xx
Hi ShelWhitt I am so sorry to read of how stressful life is for you. Its bad enough having your problems with health but with your DH struggling with dementia and COPD too I can imagine how difficult things are for you. I can see the others on here have given you some good advice so I won't repeat it all. I do understand how difficult life is because I cared for my late husband and I had my own health problems at the time . Try and get some help from social services or health people.. we had a specialist lung nurse who came to visit my DH but she always asked after my health and gave me invaluable help when I said I felt like I was in a black hole. I went to see a practice nurse who helped me immensely. I hope that you find the help you need. Sending hugs MistyA xx
Good rant, I enjoy them too. Bloody awful isn't it. I cam empathise with you. The fybro problems just grind away at your soul couple with caring with your DH this must be like a little bit of hell. The endless repetition that some dementia suffers go through can be very wearing. You need to really tell the rest of your family and medical professionals how your are. Someone needs to take some of the work load before you completely blow up because it will happen. I know your other family members have their own problems but every one can add to dividing the burden. Speaking from experience if they don't help and turn thier nose up at your pleas, when you do go down completely the care system prefers to off load care onto the family now rather than putting people into social care so they could end up with your DH on a full time basis. So by looking after you they are looking after yourself. I know it may be hard for them to look at their relative in this state and indeed carry out some of the more personal care can be difficult but is not as hard as becoming full time carers for two parents with the state providing as little assistance as it can afford.
Thank you so much for your understanding and advice . I hear everything you say and really have tried to include my daughters in discussions but I don't think they think it is down to them, and are burying their heads in the sand. They are good girls and I am not apportioning blame as I know it is difficult for them too. My eldest is going through a pretty rough time and isn't well herself. She has been having malignant skin melanomas removed over the last two years and she is also going through the menopause. Her husband has had a stroke although he seems to be quite well again now, but who knows? and his mother in her 80's, living on her own and has had two strokes, is registered blind and has walking problems. So they are also on call there too. She also has my grandson still at home still aged 27. They have all three been working from home full time and my grandson has to travel two days a week to his job 60 miles away, by train. I am not making excuses, but I understand things are not easy for them either. My youngest has a 15 year old just back to school, and she also works, part time officially but is constantly being called in to work extra, and her husband is away several nights a week as a lorry driver. They need the money as they are living in rented accommodation, which is not cheap, He is waiting for an hernia operation; having blood tests, and also and suffers from DVT. She is also going through menopause and suffers with a lot of migraines and suffers with a bad back. You can see I am between a rock and a hard place. I feel guilty because I can't help them more., never mind them helping us. I have been going through a bad flair for the last few weeks, but once things settle down, I am hoping we will be able to carry on without outside help. To be honest it is not practical help I need, we are muddling along day to day between us with the meals and housework. My daughters do help if there is any sort of problem we can't deal with, like changing light bulbs or shifting furniture, etc. it is more the mental stress from relentless questions and constantly repeating explanations and answers, plus he the constant moaning about trivial things, - too hot, too cold, etc. and so it goes on. There is also always problems to deal with e.g. trying to get a doctor's appointment, practically impossible,; on the phone for hours, ; now my dentist has cancelled yet again, I do appreciate you all giving me a listening ear, because I think that is part of the problem, being able to let off steam when the stress gets too much. Thanks again everyone, and I am sending you all hugs and warm wishes for a not too difficult time. Take care.
My my you certainly do have a lot going on, but other family members can help.I can also relate to the mental strain you are under and it is relentless especially dealing with dementia.
That is why even a small thing is helpful. I in an apartment block of broken people, people in electric chairs, people with a challenged loved one, people with neurological problems and other wonderful things. The family members call in and bring a snack, they call in and have a quick chat, a 5 minute phone call a cup of tea, even discussing their problems is helpful. We all meet in the corridors and have a chat and this is what we say.
It is the endless isolation that is the worst, the first lockdown I spent about the first month getting people in contact with their family, between Amazon and my somewhat limited abilities we did ok.
Like I said even 5 minutes on Facebook or the phone is enough, so nag a bit more.
Thanks Makie. I do understand what you say and have found facebook a God send. I don't chat much but am in a group from my home town who are constantly putting photos on and it is great to see how some things have changed, etc.and can relate to stories attached to places , and what we were doing in our teens. It is a great distraction.
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