Difficult few weeks: I am borderline... - British Lung Foun...

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Difficult few weeks

I am borderline stage 4 COPD with Chronic Bronchitis and Emphysema. I also have severe osteoarthritis in my spine, high cholesterol, high blood pressure, and more. A few weeks ago I collapsed with a suspected mini stroke and was rushed into hospital for a week on blue lights. The MRI didn’t explain my collapse, and the consultant said that I should have further tests with my GP. When I saw the GP to discuss further tests, the first thing he did was send me that same day for a set of X-rays of my neck, due to swelling on both sides, particularly the left, and pain in my left side when chewing. These tests showed nothing so yet again we are back to square one. I haven’t been out of the house since my collapse, I haven’t driven either, and my confidence has taken a nose dive. I am constantly tired and sleep doesn’t help at all, and I’m still very slightly unsteady on my feet, although I have wondered if that’s just a slight confidence issue? It’s hard enough dealing with COPD, but these extra things are wearing me right down and making me very depressed. My poor wife, despite working full time has switched into full carer mode and this is adding to my guilt and depression. Despite knowing that I am putting a heck of a lot of extra pressure on her, for the first time since we’ve been married I feel completely vulnerable and not strong enough to give anything back to my family. This looks like a rant, but it’s not. I haven’t got the energy to rant so it’s just me offloading. Thank you for reading xx

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You echo my feelings. Don’t really know what to say other than your thoughts are pretty normal. It is too bad they don’t seem to be able to diagnose why you collapsed. It’s bad enough to have a lung disease but then the strain of the lungs seems to add stress to our other organs. Prayer helps me.

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Thank you Apeter. I’d just like to know what’s wrong, and have some kind of plan for moving forward. I feel like I’m stuck in limbo

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It’s good to offload Brian and trust me, I know exactly where you’re coming from. You’ve been through a lot lately so it’s understandable your confidence has plummeted.

Hopefully things will improve very soon but in the meantime is there any prospect of getting any help with care?

I dare say your wife is doing her very best but she works full time so could do with the help maybe. Just a thought.

Take care Brian and wishing you the very best. Xxx😘

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Thank you Carole. I have wondered about getting extra help, and we now have a lady that comes in for a couple of hours a week to help with cleaning. As for personal care, I think my mental health is taking a bigger battering than my physical health. Not felt this flat for a very long time xx

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You and Pete both. Illness does some terrible things mentally as well as physically. I do wish you better days ahead Brian. Xxxx

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Hello Brian,

It's natural to feel down, depressed, guilty and all sorts of other emotions.

All you can do is your best.

You are sensible not driving in case of a further collapse. We are all grateful to you for that!!

I'm sure there are lots of things you can't do at the moment but try to think of things you can do but find difficult. Find easier ways to do them.

Do a little of what you can. Rest then do a little more.

I'm sure you already say thank you to your wife and I'm sure she does not mind caring for you because you need it.

As to your collapse, I did that too. I was told it was my ears but I knew it wasn't. By careful watch I now know, after a meal I'm slightly giddy and weaker than my norm. If I do anything that involves reaching up for more than a few seconds I get very giddy, everything goes red/black spots. S I tend to eat smaller meals unless I can seat on my sofa for at least an hour. If I need to reach up I get a chair or steps instead of reaching up, if I still can't reach I accept help.

Good luck xx

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Please wheezyof dont climb on a chair, my very dear friend fell doing so and injured her neck. Take those seconds to get the steps.

Hope I'm not being too bossy but its dreadful how much this has impacted on her.

Cheers Scouse

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Thank you wheezyof for that lovely helpful reply. I’ll take note of all of the replies I’ve had as they are all really kind x

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Hi Brian, This is so tough for you & Your lovely Wife. My Hubby works and looks after me, I I can still do a lot on my own and After the few Hospital Addmissions and Lung Transplant Assessment , I was told to be careful of Pains & Swelling in my Neck. That was about 2 years ago, I listened to the Good advice, have the Best Meds for Me, the Best Consultant and found a Strengh, I knew I had. We Have to be positive , I know this Word is Bandied about, but it is True for all of us and partners. I hope Tomorrow you will start to feel Better. I see lots of People Struggling on here, I may be a bit too Jovial at Times, Much like our Beloved Ski's & Don. They do Pick me up, as Does Sassy Carole & Pete, as you know is in Hospital. I hope you feel the same when you read your Replies. Keep Strong Hun and Lots of Love to you and Your Wife. xxxxx

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Keep being jovial, please x

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Thank you Hacienda, that’s another lovely reply and I’m really grateful. What caused your neck pains and swelling if you don’t mind me asking? Xx

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Hi Brian, I was told to be aware after they had done an Echocardiogram with a Canular in my Neck (very painful) at my assessment for Lung Transplant, They did not say I had anything wrong, But I do get pains in my Neck and sometimes feel the arteries pumping which is painful, They did warn me,(of course, my age also), so I relax and take Paracetamol and apply Ibuprofen Gel. I am well and Fine though xxx

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Be gentle with yourself. It all takes time. You have a huge number of things to cope with. Tiny steps and lots of rewards and treats.

K

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Thank you Katinka. It’s so strange feeling this vulnerable, not like me at all xx

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I’m really sorry to know the doctors are still no nearer to understanding what happened and why. Not knowing is hard. Living with poor health every day does get exhausting and draining. You have all the health issues and effects and worries and problems to contend with and deal with before you even get out of bed in the morning, before the day and whatever problems it might bring has even begun. Telling you not to let it get you down is as silly as telling you not to let it get you short of breath. But, the friends and family who don’t run away from us at the first sign of illness are usually here to stay. Even when that means caring for us, being our strength (physical and mental) and running around after us. I’ve been in the situation of being cared for by and caring for a family member. I didn’t sense that it was a burden to care for me, and when I was caring I was glad to do so. I don’t know your wife but you’re probably not putting as much pressure on her as you think. You’re giving something back to your family all the time, every second of every day, by being part of the family. A family is the people in it. Sending you all best wishes and hoping things improve for you soon.

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Hi HungryH, for that lovely reply. I really appreciate it. It’s so frustrating but somehow I need to get my head in the right place so that I can deal with it better xx

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Are you overweight?

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No, well maybe slightly but nothing to worry about.

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I’m really feeling for you as I’m slightly over weight too and I just wondered as I get told I need to lose weight as it plays a big part on my health, I’m still craving smokes

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I quit smoking 8 years ago and still get cravings! I’ve not given in yet though 😎

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A similar thing happened to my daughter Brian, and she is only 34! It took 5 months for her to get some answers. I think the trouble with staying positive is that when you have complex issues, one confuses the other and there's a such a lot to keep up with. Have you spoken to your doctor about how you feel and also about checking if there are any other tests he can offer? If you have a visible swelling in your neck, surely that is reason enough to investigate further? Sometimes it seems as we have to be rather assertive in order to get some answers. All the best.

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Thank you Uhelga. 5 months! She must have been pulling her hair out bless her, what caused it? I’m not driving at the moment so couldn’t get to the surgery but hope to get their either tomorrow or the next day. I’m already on antidepressants so don’t know what more the doctor could do about how I’m feeling. Sorry to sound so negative xx

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Don’t worry it’s quite understandable!

She has problems with 2 disks following a chiropractic treatment and it looks like the TIA was caused by a genetic fault with one of the arteries into the brain. It’s all very frustrating.

By the way, I rarely go to the surgery these days, my docs are happy for me to book a telephone appointment if I have any questions. Maybe your surgery offers such a system?

Hope you get some answers soon.

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Awww parker I do feel for you and thoroughly understand I feel hopeless and useless at times with my partner having to do so much for me, how some days my daughter has to even do my hair because I can't even do that. I feel like I'm a burden and how I wish I could do more but I know if I try too hard I'll end up in hospital. The thing that keeps me going is looking at my family and thanking each day that they are around me, cherishing each moment I share with them, even the bad times!! I hope you get your answers soon and get sorted big hugs to you and your wife xx

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Hi Brian,

I understand exactly what you mean. Sometimes the feeling of guilt that we, the patient have is overwhelming. We think we put our families through awful things, but the truth is if the boot was on the other foot we'd be no different. This is your bad patch and your wife is helping you through it. There will come a time when she has a bad patch whether it be mentally or physically and you will pick her up too. That's just what loved ones do.

Make sure you always, always talk with her about her day, and yours. Don't allow this to become to become your new norm, and importantly, don't let it take precedence over the "couple" time between you (VERY IMPORTANT!! ). It is so easy to get engulfed in our illness or for the carer to get overwhelmed by care duties, that it can take over our lives without us really noticing, until all the normalcy of life is gone. I speak from experience. 😑 I would get all the extra help you can get. I started home care yesterday, and apart from the slight awkwardness of having a stranger hoovering in my room and another scrubbing my bath tub, I was actually so grateful for the help.

Please know that in time things will get better. It is so important to keep moving forward no matter how slowly. I am thinking of you and your family Brian. When you feel like you can't manage, just know that the strength that has taken you this far , will take you the rest of the way. 🌿

*Gentle hug*

Cas xx ☕🍰

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I had a mini stroke exactly one year ago and the fatigue was terrible but it has got better.

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Feeling for you and hoping things turn around for you soon, sending best wishes xx

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Hi Brian. I'm so sorry that you are feeling so poorly and vulnerable. When I first read your post, I thought it was written by my husband. My husband is 65 and has been at stage 4 GOLD COPD for the past two years. This horrid disease has robbed my husband of his pride and has made him extremely vulnerable. He is very ill atm and we are not quite sure where we are heading.

All I know is I love my husband very much as I'm sure your wife loves you so please don't feel guilty for feeling its too much for her. I've found as a wife who is watching the man she loves, get worse and worse, soul destroying but bit helps me to talk to people not connected to my husband. Just off loading can help. It's a very scary time for you and your wife but we are all sending you our warmest best wishes. Good luck Brian and I hope you get answers soon.

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please read what I told Brian Taylor and do it for your husband good luck and god bless you

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You can offload here and you can even rant, because we understand.

That’s a difficult situation you are dealing with.

All I can offer you is good wishes that things improve quickly for you.

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Brian Taylor

Hi, you & I seem to have the same diseases, they both sap the strength out of you no matter how much sleep you get, you wake up tired. I know my main sleeping problem is Psoriasis & scratching much of the night leaves me fatigued in the morning. I too have osteoporosis which hampers my mobility to some extent and efforts become harder due to the other problems. Unsteady on your feet ties in with this so in your situation it is not unusual. You are not alone, people on this forum can help with their own experiences but be sure none of us are medical professionals, it's what worked for us or how we coped with a situation.

IKeith

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I sincerely hope things get better soon for you.

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hello brain Taylor

I have been on this forum telling very sick people to try something which is to research magnesium deficiency and symptoms of magnesium deficiency.by the sound of it you appear to me to have a magnesium deficiency all the classic symptoms.when we have a magnesium deficiency our body cannot place it's calcium where it should go so it deposits it in our organs ie heart lungs kidneys brain joints this causes what they call calcification ie Harding of internal organs arteries. in time life threatening also osteoarthritis osteoporosis because our calcium cannot get to where it should go bones and teeth due to magnesium deficiency.magnesium is the key needed by our body to allow calcium to get into the bones.please research magnesium deficiency and symptoms of magnesium deficiency it should ring a bell alot of your symptoms will be there .magnesium is in some foods but over the years it has been in decline due to soil depletion. 80% of humans are deficient in magnesium you may be one of them please research foods high in magnesium and eat them also look at supplementing magnesium.there are different types some better than others at getting into your system.adult males need 420 mg per day females360 per day if you have a blender or juicer blend or juice your fruit and vegetables this is where you will find foods with the most magnesium in them I take 400 mg magnesium citrate every day but you can start with 200 mg for the first week even at 400mg I am only getting 40% magnesium from the 400mgs which is 160 mgs so please try this magnesium it will not harm you the worst it can do is give you the runs if this happens cut back until it settles down good luck and god bless you

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