Just wanting to share my thoughts with people who might understand, although I realise my problems are nothing compared to many here and I’m probably just making a fuss about nothing. Apologies for the long post.
For background info, I’m 46 and have had asthma since a toddler. Started having more problems a few years ago (no major asthma attack, just more symptomatic on a daily basis and developed a permanent productive cough) and was put on high strength combination inhaler (now relvar ellipta) and Montelukast. Last year started getting frequent bacterial chest infections (haemaphillus, moraxella and strep pneumoniae). Had a CT scan in July which showed mild mucus plugging and was told it was not enough to diagnose bronchiectasis but was consistent with small airways disease (spirometry showed good peak flow and volume but also showed that there was some obstruction in the small airways) and the way to treat this was better control of the asthma. So prescribed spiruva respimat and carbocysteine as well as the above. After a bout of strep pneumoniae in December I had a 6 month reprieve and thought maybe last year was a blip, but then I got another bout of strep pneumoniae in July.
I’ve just had my worse bout yet of strep pneumoniae (could barely get out of bed for a few days, chills and aches, intense headache and vomiting at one point, O2 levels fine but pulse rate was high and peak flow dropped quite a bit). Luckily the doctors here give me antibiotics now (and this time steroids too) as soon as I go in with my little pot of green gunk and don’t make me wait anymore for the results to come back. Been off the antibiotics for a week and a half and infection is gone, but I’m still totally wiped out and it’s quite a struggle to do the bare minimum to look after my family (I have two daughters and a husband who is disabled with arthritis, fibromyalgia, depression and ptsd). Worse than the physical fatigue is feeling so slow mentally (like my thoughts are having to go through treacle). Went back to the dr this week and he said my chest was fine and that it was just post pneumonia fatigue.
The thing is when I started with all the infections last year I was nearing the end of my second year of a full time degree and ended up spending the summer doing some of the essays in the resit period. As I was still having problems (and my husband also had a mental health crisis) I suspended my studies for a year because I just couldn’t see how I was going to manage. Because of the break from infections I thought this year would be OK (maybe last year was just a blip) so I started back at Uni in September. But now everything is going pear shaped again and might have to suspend my studies again because I’ve already had Mitigating circumstance applied to 3 assignments, I’m behind on the reading/lectures and have 4 other assignments due in the next 5 weeks and don’t feel in a fit state to do any of it at the moment. Trouble is will next academic year be any better with regards to my health. I wanted to get a degree so I could get a better full time job and give my family a better standard of living (my husband can’t work due to his disabilities). But at the moment if I keep getting these infections I worry about whether I’ll be able to hold down a job anyway (nobody is going to want to employ someone who keeps having time off for chest infection several times a year. Also I live on a small island and pretty much the only full time work is in town (on another island) which involves a ferry crossing and a long day and I wonder if trying to do this (as well as looking after the family) will end up with getting myself run down and making infections more likely (trying to move but I need a council transfer and no luck so far). The only work really available on the island is a social care worker, which I did before I started my degree. I was fitter then but still found it physically demanding due to the shift system (doing home care I’d start at 7.30, be out for a couple of hours or so, come home, go out again for a couple of hours at either lunchtime or teatime and then again for bedtime visits, finishing at 10pm).
So basically I’m fed up because I’m worn out at the moment, fed up because I’m stressing about what to do about my degree, fed up because I’ve lost confidence in my health and fed up because I feel uncertain about the future and feel kind of powerless to influence my future and that of my family (because everything depends on my lungs). My asthma never limited me in the past and I’m struggling to come to the acceptance that it is now (not because I have bad attacks but because of the infections which seem to me ages to get over and to be honest I don’t think my stamina fully recovered from the ones last year even in the 6 months when I had a break earlier this year).
Thanks for listening
Apologies for the rant.
Written by
WindsweptRissa
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It’s definitely not a rant or a fuss about nothing. I’m really sorry to know there are so many difficult things going on for you just now. I understand the difficulty of location and limited employment options. There is no easy solution and I have nothing helpful to offer. i have so much admiration for you wanting to do so much for your family in spite of everything that’s going on with your own health. Sending you very best wishes and hoping things will start to improve for you soon.
I had to take a deep breath after reading your post. Wow. You just have so much on your shoulders. I am afraid that rather than the asthma limiting you, the circumstances you are in and the sheer pressure and weight of all you must go through every single day is grinding you into the ground. Hence, you are getting more infections than you used to. There's only so much your mind and body can handle at once.
I can't tell you what to do about your course, as I can only imagine all the time you have already invested. It is extremely important to you obviously. And wanting to do better for your family is so understandable. But I am concerned that the added stress of assignments, lectures and deadlines will further exhaust you. Obviously, with the situation you are in caring for your children (huge challenge in itself) and your husband you already have in essence a full time career! It's not just physical, mentally you are in a dark place right now. Not knowing what to do and yet feeling the pressure to do better for the sake of your family.
I will just say this. You are already doing the best anyone in your circumstances could do. You are being a good loving, mum and a supportive, caring wife. But you must also include Rissa in there somewhere. Be kind to yourself. Is it worth continuing on this course right now? Or would possibly putting it off until you get on your feet a better option? If you don't continue it right now, it is certainly not a defeat. It is self care. Having a little more space for manoeuvre so you can look after yourself as well as your family without continuously being stressed about the "other stuff". Peace of mind is just so important.
And you know we all need to rant and let go sometimes. You are no exception!! I hope you will rant more often. It's very cathartic.
Thank you for your reply. Definitely feeling rather worn down by everything at the moment. Haven’t made any final decisions yet, but I’m leaning towards suspending my studies and giving myself a proper break for a bit to see if I can improve my health.
Cas, your reply is on target! If Rissa doesn't eliminate the worst burdens, they will all be removed when her physical & mental strength are totally overwhelmed. The on-going infections are a big warning that something really has to give. Otherwise, she'll be in no shape to help her family or, equally if not more important, herself.
I know it won't help you at all, but I can relate to your post so much.
I was 47 when I was diagnosed with asthma after contracting double pneumonia , but I had been breathless on exertion most of my life. I was reading for my degree with the OU , had three asthmatic daughters , working part time, and my husband had problems.
Firstly, I always feel very down after taking a high course of steroids, but I know this will pass.
Secondly I was starting with the peri menapause, a blood test showed this. I felt like I was in a fog.
Thirdly the continual chest infections , really got me down....the breathlessness, the sickness etc.
All the while knowing that my wage was needed.
Can you make an appointment with your health professional as soon as you can.....and show them a copy of your post so that they really know how you feel.
Check that the infection has still gone ....that the discoloured gunk doesn't come back, make as much fuss as you can if it does and get treated ...difficult I know when you are feeling ill.
Maybe a different inhaler will help, some do not suit me .
Contact your university and explain your worries, the OU were very helpful to me.
And as Caspiana says, try and put yourself first , at least for a while. I know my children were always my priority , but your health is paramount.
Keep in contact , sometimes just having a rant with people who can relate to your symptoms helps.
Is there a course near you that deals with people with long term health conditions, eg asthma. I have been on one , and another is starting soon . Gives you tools to cope, and therapies such as mindfulness and meditation.
At the moment you feel overwhelmed ......take baby steps , sometimes you will go backwards, but slowly you will get there.
Sorry for the long post to wade through.....sending best wishes and take care.
Excellent reply from all our members but i particularly like the idea put forward from Knitter that you show your GP or Asthma Con the post you've written as sometimes i find it difficult to a) remember what i need to say so i write it down and b) by you reading your post to him/her the maximum details are only taking a small amount of time as we all know how short these appointments can be.
Also many other members have suggested good ideas so you can see you have only acted just like them, its just they've been able to offer you advice as will you to another member if the need arises. Good luck, be kind to yourself, see your GP and let us know how everything went. Gentle hugs 💞
I think You maybe right about the steroids. The do make me quite tense and agitated when I’m on them so it make sure sense that coming off them could have effects too.
The problem with going to the doctors is that we only have locum cover and you never know who you’re going to get week to week. It’s a shame our semi regular one left this summer because he knew me and my husband quite well so I wouldn’t have had to explain everything from scratch.
Hi Rissa, I struggled with a reply to your post as my heart goes out to you, dealing with a husband that needs care and raising kids more or less on your own is so hard, without the added health problems you must be so wiped out. Do you have friends or family that could help out a little just to get you over this period of recovery, which you really need at the moment.
Our good friend Caspiana's reply says it all, put things on the back burner until you are well , just make time for yourself or you wont be fit enough to look after everybody. I do hope you get better soon x
Don’t really have any support here. We are trying to get a council transfer to where my grownup son lives on the Scottish mainland. This would solve a lot of our problems (we’ve been awarded priority for a bungalow because of my husband’s disability as we currently have a house with only one toilet upstairs, we’ll have access to support from my son, the job situation will be better and I’ll have access to take aways and home delivery from supermarkets if I’m too ill to shop/cook). But not many bungalows come up and there are a lot of people requesting them.
You really need the help of a councillor or body that can put you down as an emergency, I would contact everybody you can find, social services included and push them for this transfer, get everybody on your side. Like you say this move would really solve all your problems. Fingers crossed you get somewhere with this quickly x
Have read your post several times trying to figure out if there was something I could say to help you above offering you my sympathy and understanding of what is a very difficult situation you are in.
Firstly I’d like to say well done for holding your family together whilst having your health problems. While you may not feel it but you are a very strong person.
One of your main issues seem to be getting infections as these are preventing you from doing your normal duties as partner, parent and student. No easy answers to this apart from taking good care of yourself and resting to restore your immune system. There’s lots of info on here about preventing infections and building up your immune system.
People with asthma, as long as it’s controlled on medication can hold down jobs etc but I’m wondering from your post and the information you give that your condition is more than just asthma. Constant infections cause a lot of damage to the lungs.
I’d love to be able to say to you that you should continue with your degree because I can sense from your post that it means such a lot to you and particularly when your half way through it. I know from experience that people can sometimes achieve a lot in the most challenging circumstances but only you know whether it’s feasible to continue or have another break.
Whatever you decide I hope you’ll visit here again and let us know how your doing.
Hi, Rissa. I've done some degrees while dealing with challenging circumstances. If your degree is taught in a modular basis, you should be able to ask to continue to study part time on the grounds of health difficulties and the challenges of personal circumstances. You should also have a named tutor to discuss such issues with, who should be able to help you make the best choices for your circumstances. You should also be able to finish the course early if you have completed one or two years of study, with a Certificate, Diploma or Foundation degree which is portable and may be taken into account if you choose to study again in future years when circumstances improve.
My last qualification was in church music which I studied at Christ Church Canterbury part time and by distance learning. It was then that I was diagnosed with COPD. I decided to finish at the end of Year 2 (which to me was year 4) with a Foundation Degree (sometimes known as a Diploma), as I had learned enough to do my present job as a church organist, didn't need the full degree, and was concerned about the effects my continuing studies would have in my home life.
Hope this helps to clarify your thoughts in that area. Wishing you all the best and improved health for both you and your husband.
My heart goes out to you having been in a similar situation after becoming a single mum in my early 40s, working + studying to improve the family lot+ 3 children + 2 dogs & a mortgage. If only I'd known then how much of a toll stress can have on ones health I might have made it easier on myself. You made a great move coming on here to share your load, you have so much on your shoulders.
I cannot add much, I just know that without your health life is very tough indeed.
Yes, I’m coming to realisation that I’m not superwoman and it’s not just a case of toughening up. Feeling like I need to simplify things as much a possible to give myself space to see if I can improve my health.
If we're strong we're our own worst enemy! I always worked brilliantly under stress and duress for years. Things I thought completely normal others wouldn't dream of. It's only now, 20 years later I realise what a toll it took.
Hello, so sorry for your plight. I went down a similar road many years ago. Asthma since birth but was controlled as the inhalers improved over the years. I am no doctor, but you could ask your doc to be checked for ABPA.
Allergic Broncho Pulmonery Aspergillosis.
That is the diagnosis I got in 2008 after walking your path.
It is connected to asthma and it is an allergic reaction to moulds.
What have you got to lose by asking for this check?
I sincerely wish you well, you have a lots to deal with and don’t need to be sick. However, I would like to say if you are diagnosed with ABPA, it takes time to get the right medication for you because everyone is different so you will have to be patient. Good luck, fight for your health with your doc, your family need you. Get all the help you can from family and friends and government aid if possible. I wish you your health back, for without it we struggle. Xxxxx
I’ve been tested for ABPA and it came back negative. I feel like my asthma is following a similar path to my mother’s. She had asthma from early childhood which got worse as she got older. She now has COPD (non smoker) and is now on permanent steroids, antibiotics, nebuliser and cpap machine, after a period of being in and out of hospital with serious infections. I know I’m not my mother but I have to confess that part of my anxiety about the future stems from seeing how my mother is and wondering if that’s where I’m heading.
Oh my dear asthma suffer. So sorry you are under this stress. I can truly empathise from my own personal caring duties how health, money and future are major stress factors making finding solutions tough.
I can't help with the medical side but as someone who works with university students I would say, that, as your university is already helping you, then perhaps liaising with them again to find a way to tailor your studies to your situation, and take your studies over a longer period might help. (Don't worry about having to keep asking - universities are progressive now and want to help if they know he full picture, plus when you graduate you will be a great showcase for their attitude to health disabilities). Importantly, you don't need to graduate immediately, every step will eventually get you there, even if it takes several more years.
Money - as caring jobs are probably the last thing you should be doing as you need your caring reserves for yourself, I wonder if you have skills that you could use for coaching/working via the internet so then you could work a little from home e.g. like a sharing a subject from your university course to young students or a language for other people who can't leave the house (e.g. I have Spanish conversation via Skype as I can't get to evening classes anymore .) Or if you have skills like sewing, then a little ebay business? This won't help massively but it may help you feel a little more in control of your life. And perhaps, out of your bad luck, you might even become a successful entrepreneur.
This mantra helps me: On bad days remember that everything changes, so a good day will come along soon.
I wish you some better luck with your health. Thinking of you
Wonderful - perhaps to start, just some small items for Christmas, and other event days like Valentines, Easter, Halloween to see if it works and so you don't have a big out lay of money or work.
I just looked on ebay under "crafts" and saw " Knitted 2 X Christmas Chocolate Orange Rudolph Reindeer Cover / Covers Handmade *ali.ebden.knits* - this is just an example (I notice this person puts names of famous chocs in the heading so perhaps that get people to her site (as there seem to be a lot).( For selling anything, please do check any safety regulations - I wouldn't want to give you a new headache!)
You mentioned you live on an Island so perhaps there is something special about that that location could be used. Sarah Moore on TV's Money for Nothing BBC programmes takes photos of things, has them printed onto fabric by a supplier (probably again via internet) and then she makes them into simple yet unique cushion covers. If your island has some special selling point (birds, fabric, wool, sky, waves ) then that might help with ideas or your company name ( Windswept sounds good already). Just ideas to spark a bit of hope and energy.
Wow I really feel for you my love you aren't going through a good time at the moment and I hope posting your thoughts has helped you in some way .I unfortunately haven't any answers to help you I'm not one for posting normally but I had to sit back for a while and could only imagine what you are going through I just wanted to say I'm thinking of you and your family and I really hope things get better for you stay strong and rant all you need to there's some lovley folk on here who will beore help than me take care xx
Hello WindsweptRissa - you have chronic asthma, small airways disease, obstruction and frequent infections. These indicate that you should have immunity tests and if you haven't had them done already, it might be worth asking your hospital consultant.
Although you haven't had an official diagnosis of bronchiectasis, it is not uncommon for this to develop in long term, unstable asthma. My OH has a similar history to yours and has it. The problem is that infections brew up because the sputum pools in the airways. Asthma makes it difficult to cough up due to the bronchoconstriction. Do you have a good clearance regime and have you had any advice/help about this? I wonder if you should perhaps ask to see a bronchiectasis specialist.
You are under immense pressure at the moment but instinctively I feel that you need to concentrate on one thing at a time and your health is the most important thing. No good getting a degree if you are too ill to reap the benefits of it. As you say, your job prospects could be limited due to your ill health. Remember that stress can exacerbate asthma.
I hope that you manage to make a decision on the best way forward. If you are struggling with this then perhaps you could ask your GP to refer you to a counselling service.
I had blood tests at the hospital clinic for problems with my immunity which all came back fine, so it’s not that. I don’t have a clearance regime though.
Having the immunity tests is a good start. Have you had the relevant vaccinations - influenza, pneumovax and possibly haemophilus?
Your description suggests bronchiectasis even though it’s not officially recognised as such. My OH was diagnosed but categorised mild. However, he is severely affected and medics say he is a complex case due to having asthma as well. As you have asthma it makes sense to use your bronchodilators regularly to keep the airways open to help with clearance of the mucous plugs. BTW his O2 sats are usually ok too but this is not congruous with the severity of his illnesses.
Active cycle breathing might be useful. The carbocysteine should help to thin the mucous. You need to take it regularly. OH has two capsules three times a day. Nebulized saline can also work well. Usually normal saline (0.9%) is used but in specialist centres hypertonic saline is sometimes offered.
There are a few devices eg Flutter Valve, Aerobika, Aerosure PEP that can help. Clearance needs to be done at least twice a day without fail. If you can keep your lungs clear it can help to prevent infection.
If you have more than three infections per year this indicates that long term antibiotics may be needed. Azithromycin is known to be useful in some people. Inhaled (nebulized) antibiotics are sometimes used in people who are colonized with pseudomonas.
Your post pneumonia fatigue is common and it can take months to resolve. The important thing is to listen to your body and not push yourself too hard. OH is a lot older than you and had bilateral pneumonia earlier this year. He was in hospital for some time and needed IV antibiotics. He has been very debilitated and from what I read on here many people have the same experience.
You have such a lot on, taking care of your children and husband plus studying. It is understandable that you want to take care of your family financially but it seems that you expect a lot of yourself. Have you had a social services needs and carers assessment? If not, perhaps consider asking for them. Do you have all the relevant benefits? If not, you can ask the social worker about this or consult Citizens Advice Bureau. Please accept any help that you can get and be gentle on yourself.
Cas' reply to you is on target, IMHO, Rissa! You must take care of yourself first & foremost by eliminating some of these burdens, those you realistically can by prioritizing. Keep in mind that if your physical & mental health have to come first. Good luck!
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Lymphocytes still low
not feeling good
Sounds like Rice Krispies upon waking
Waiting anxiously for CT results
feeling no cares
