When Caring for a Loved One Becomes Overwhelming: A Guide for Family Carers
Caring for a spouse, parent, or child is one of the most loving things you can do — but it can also be one of the hardest. Many family carers feel torn: wanting to give the very best care, yet struggling with exhaustion, isolation, and the feeling that “no one else can do it as well as me.”
This guide brings together insights to help you recognise when caring is becoming too heavy, why it feels so difficult to let go, and how to build a sustainable balance that protects both you and the person you love.
Why caring feels so demanding with family
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Loss of independence: Illness often leaves people feeling powerless. Demanding behaviour can be a way of trying to regain control.
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Role reversal stress: When a child becomes a parent’s carer, or a spouse becomes more like a nurse, both sides can feel uncomfortable.
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Emotional safety: Patients often hold back with professionals but show raw feelings at home. That can come across as extra demanding.
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Blurred boundaries: With family, it’s harder to say “no.” A patient may expect more than they ever would from an outsider.
When the caring role becomes unreasonable
Caring is no longer sustainable when:
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Your health breaks down from exhaustion or stress.
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You are completely isolated, with no time for friends, rest, or hobbies.
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The caree’s demands exceed real need, and everything revolves around them.
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Boundaries disappear and you can’t say no without conflict.
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You are the only source of support, with no outside help.
These are warning signs that it’s time to rebalance the situation.
Why it doesn’t mean “defeat”
Asking for help can feel like admitting failure — but it isn’t.
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Caring is a marathon, not a sprint. Protecting your health means you can keep caring longer.
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Strength means knowing your limits. Bringing in help shows foresight, not weakness.
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Love isn’t replaced. Professional carers can take tasks off your hands, but your relationship and bond remain uniquely yours.
Think of it not as “stepping back” but as building a care team. You remain the anchor, but you don’t carry everything alone.
Why it’s hard to let others help
Many carers say: “They don’t do it as well as I do.” This is natural — you know your loved one’s habits and needs better than anyone. Professionals may work differently, and that can feel uncomfortable.
But:
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Different doesn’t always mean worse — just not “your way.”
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Perfection isn’t sustainable if it destroys your health.
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Your role as spouse/child/friend is irreplaceable — letting others handle routine care may free you to keep that role.
Start small: allow someone else to take over one task or cover for a short period. Gradually, trust can build.
Can problems be predicted?
Yes — carers often see the signs early:
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Constant exhaustion or resentment
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Dropping their own health needs or appointments
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Losing touch with friends and community
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Feeling guilty if they take any time for themselves
If these signs appear, it’s time to bring in extra support before crisis strikes.
Practical steps to make caring sustainable
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Have early, honest conversations about what you can and cannot do.
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Ask for a Carer’s Assessment (in the UK) — this can open up respite care, day services, and financial support.
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Bring in professional support early so it feels like teamwork, not abandonment.
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Protect your own time — even short, regular breaks keep you healthier.
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Seek peer support — carers’ groups and counselling reduce isolation.
Final thought
Caring is an act of deep love. But love alone cannot carry the whole weight forever. Sharing the load is not defeat — it is the wisest way to ensure that both you and your loved one remain safe, cared for, and connected.
You are not failing. You are leading a team, protecting your own well-being, and preserving the relationship that matters most.
🧾 Getting a Second Opinion for Aspergillosis: What If Your Hospital Refuses?
Many patients living with aspergillosis or allergic bronchopulmonary aspergillosis (ABPA) ask for a second opinion — often from a national centre like the National Aspergillosis Centre (NAC) in Manchester or from another specialist elsewhere in the UK. But sometimes, hospitals resist sending your case outside their own department.
Here’s what’s happening, why it might occur, and what you can do.
🤔 Why Would a Hospital Refuse an Outside Opinion?
It’s understandably frustrating when you’ve asked for expert help and your local hospital insists on keeping things “in-house.” Here are some reasons this might happen:
1. Internal Referral Rules
Hospitals sometimes have a policy to refer to another consultant within their own department first. They may consider this a “second opinion,” even if it’s not truly independent.
2. Cost and Complexity
Referrals to another NHS trust — especially across health boards or into England (e.g. to NAC) — can involve extra steps and costs. Some hospitals prefer to avoid that unless they feel there’s no choice.
3. Professional Sensitivities
Some doctors may feel a national second opinion implies criticism of their care, even if your request is made respectfully.
4. Lack of Awareness
Some clinicians aren’t fully aware of what the National Aspergillosis Centre offers — or may underestimate how complex aspergillosis, ABPA, or recurrent fungal infections can be.
🧑⚕️ But Isn’t a Specialist Opinion My Right as an NHS Patient?
Yes. If your GP or hospital team believes it’s clinically appropriate, you have the right to be referred to another NHS consultant — including one outside your local area.
The NAC is nationally commissioned by NHS England to provide care for people with chronic aspergillosis. They accept referrals from across the UK.
💷 Why Private Care Might Not Be an Option
Some patients consider going private when local NHS referrals are blocked — but private care often means:
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Paying for new scans, blood tests, and sputum cultures
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No direct access to previous NHS records
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Higher costs than expected, especially for complex tests
If you can’t afford this, you are not alone, and there are still NHS options available.
🧭 What You Can Do Next
Here are practical steps if you're being blocked from getting a second opinion:
✅ 1. Restate Your Request Clearly
Ask your GP (or write yourself) to reply to the hospital and explain:
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You are specifically asking for an opinion from a national expert service (e.g. NAC or Dr Iain Page in Edinburgh).
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This is not a rejection of their care, but a request for specialist reassurance, diagnosis support, or treatment planning.
✅ 2. Ask for a Tertiary Centre Referral
Use the term “tertiary referral” — this means a referral to a national or highly specialised NHS service.
✅ 3. Raise It with PALS
If you're still being blocked, contact your local Patient Advice and Liaison Service (PALS) or NHS complaints team. Explain:
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You have a rare/complex condition,
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You’ve asked for a national review,
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And you’ve been offered only an internal opinion.
✅ 4. Get support on NAC Support Facebook Group
- https://www.facebook.com/groups/aspergillussupport/
💬 In Summary
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You’re not being difficult — you’re advocating for your health.
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It is reasonable and often necessary to seek input from specialists like those at the NAC.
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If you’ve been told “no,” it may be due to policies or misunderstandings — not a reflection on your need for better care.
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Keep asking, and if needed, involve your GP, or PALS.
Harnessing the Power of a Symptom Diary: A Guide to Better Health Management.
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Managing a chronic condition can be a challenging journey filled with uncertainties. However, there is a tool that can help patients take control of their condition and help them understand potential triggers and how lifestyle factors may impact their condition. This tool comes in the form of a symptom diary, a personal record that tracks information relevant to the patient, such as symptoms, ad hoc medication usage, exacerbations, food intake and activities.
Key benefits are:
- Empowerment and control are at the core of why keeping a symptom diary is beneficial. It offers individuals a sense of ownership over their health, allowing them to monitor and manage their condition, rather than feeling overwhelmed by it. This proactive approach is not only beneficial for the patient's sense of well-being but also contributes to research and future planning. Documenting symptoms can help better understand the condition, aiding not just the individual but also the broader community by contributing valuable insights into chronic illness management.
- Another benefit of maintaining a symptom diary is its ability to foster improved communication between patients and their medical teams. By providing a detailed account of symptoms and their impacts, a diary ensures that important information is communicated effectively, allowing for a focused discussion during appointments. This enhanced communication can lead to more informed and focused care, concentrating on what truly matters to the patient's health and well-being.
- Beyond facilitating better dialogue, a symptom diary promotes self-awareness through monitoring and reflection, patients may notice patterns in their symptoms, identifying what exacerbates or alleviates their condition. This awareness is crucial in managing chronic illnesses like aspergillosis, as it empowers patients to make informed decisions about their health.
- A symptom diary can also play a role in developing personalised treatment plans. Each entry can help the clinical team better understand the patient's condition, enabling in some circumstances the creation of a treatment strategy that is as unique as the individual. This tailored approach can improve health outcomes, making a difference in the patient's quality of life.
Starting a symptom diary involves a few key practices: maintaining consistency in entries, attention to detail, and regularly reviewing the diary to identify trends or changes. What to record in a diary includes the date and time of each entry, detailed symptoms, ad hoc medication usage, environmental exposures, dietary intake, physical activity, mental health, and sleep quality.
In conclusion, a symptom diary is a powerful tool in managing chronic conditions, offering benefits such as improved communication with healthcare providers, increased self-awareness, empowerment, and the facilitation of personalised treatment plans. By taking control of their health information, individuals can navigate their journey with confidence and clarity, paving the way for a better quality of life.
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Thoughts on the Aspergillosis Journey Five Years On - November 2023
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Alison Heckler ABPA
I have written about the initial journey and diagnosis before, but the ongoing Journey occupies my thoughts these days. From a Lung/Aspergillosis/ Breathing perspective, now that we are coming into summer in New Zealand, I feel I’m doing ok, looking and feeling well.
Some of my current Medical Background:-
I started the biologic, mepolizumab (Nucala), in September 2022 after a really difficult 12 months (another story). By Christmas, I was much improved and, from a breathing and energy perspective, had a good summer; although the weather was so bad, it was hardly a summer.
I got complacent about precautions, and in early February, a grandson visited with what turned out to be a nasty flu that I then went down with. 6 weeks later, a follow-up X-ray on the lungs showed a heart issue that needed a cardiologist to check “well the aortic stenosis isn’t a big worry but the aortic duct never healed over as a child. We could repair but …..” the answer to that was “I’m over 70, had four pregnancies, I’m still here & the risk factors with all my other issues ….. not going to happen”
Once finally over those two hiccups, my 81-year-old sister was admitted to the hospital, and I was trying to advocate for her. She got Covid, which I subsequently got from her. (I had done well to stay Covid Free for 2.5 years). But yet again, any infection I get these days takes much longer to recover from; I still had it at four weeks, and at 6-8 weeks, my GP was concerned that I might have developed Long Covid as my BP and heart rate were still a bit on the high side! My sister was diagnosed with Myeloma and died within six weeks of diagnosis.
Since starting the Mepolizumab, I had noticed increasing problems with incontinence, and this developed in a full-blown Pyelonephritis (eColi Kidney Infection). As I only have one kidney, the anxiety level over this was a bit high as the symptoms were/are all very similar to when my other kidney was eventually removed. (No plan B here). Toss-up: able to breathe versus learning to deal with some incontinence?
I overlay all of 2023 with ongoing Mental Health issues with my 13-14-year-old granddaughter, so my daughter and her husband, on whose property I live, were totally preoccupied with trying to keep her safe and all the care that she requires. We are all grieving the loss of this child who is now in care.
Pain levels are high, and energy levels are very low. Prednisone has essentially killed my cortisol production, so I have Secondary Adrenal Insufficiency and Osteoporosis.
But I am Thankful
I am so grateful that I am blessed to live in a country that has a Public Health System (be it a similarly crumbling one as NHS). I was able to move to an area that has a good teaching hospital and be close to my daughter (Palliative Care physician) & her husband (Anaesthetist), I have access to free public health medications and an excellent GP who listens, looks at the whole picture and does her best to get all the Specialist to review the situation. Recent x-rays and Dexta Scan revealed the extent of the damage and deterioration of the spin: Info I need to bring to the attention of the Physio who is trying to help with my motivation/activation of strengthening exercises. Endocrinology suggested a 5mg increase in my hydrocortisone and a pushing out of the dose timing, and that has made a HUGE difference in how I cope with dealing with all that is going on and the pain. Urology has finally accepted a referral to review my kidney situation, although it still might be a few months before they see me. A recent checkup with the Physio found that the exercises had made a difference, and I was considerably stronger in my legs. I still struggle to do these, but this information informs me that I need to persist.
The Biggest Battle is Mental Attitude
Each of our stories will be unique, and for each of us, the battle is real. (When I write mine all down, it does sound a bit overwhelming, but generally, I don’t think of it in that way. I have shared my story only as an example of the complexity of the journey.)
How do we cope with all of the changes that come upon us? I knew that my health would change as I got older, but I feel like it has come upon me so rapidly. I didn’t think of myself as old, but my body is most definitely thinking and behaving that way!
Learning to:
Accept the things I cannot change,
to Work on the things I can change,
And the wisdom to know the difference
This process of letting go of dreams and hopes and setting new, more modest goals has been important. I have learned that after a more strenuous activity (by my current abilities), I have to sit down and rest or do something that allows me to rest and be productive. I have previously been somewhat of a ‘workaholic’ and not much of a planner, so this transition has not been easy. All of these changes are a Grieving Process, and like any grief, we heal better if we acknowledge it for what it is, then we can learn to live with our grief. We can move forward into all the ‘new normals’. I now have a planning diary with notes on what I want/need to do, but it is not planned out in detail as I have to “go with the flow” as it were on how much energy I have available to get things done. The reward is that I will eventually get things ticked off. If it’s only 1 or 2 daily tasks, that’s ok.
When I finally got a diagnosis in 2019, I was told that “it was not lung cancer; it was ABPA, which is chronic and incurable but could be managed”. What ‘be managed’ entailed, I most definitely did not take in at the time. Every medication that we take is going to have a side effect; antifungals and prednisone are way up there in that respect, and it is sometimes the side issues that are more difficult to cope with. Mentally, I have to remind myself that I can breathe and haven’t died of secondary pneumonia because of the meds that keep the aspergillosis under control. I am alive because I manage my intake of Hydrocortisone every day.
Weighing up the benefits versus the side effects. There are some medications that once I studied the side effects and contraindications and weighed that info against the benefits for relieving Peripheral Neuropathy, I consulted with a Dr, and we dropped it. Other medications do have to stay, and you learn to live with the irritations (rashes, dry skin, extra back pain, etc.). Again, we are each unique in what we can manage, and sometimes, it is the attitude (stubbornness) with which we approach the situation that will determine our direction.
A note on stubborn…. Last year, I set myself the goal of getting my daily average walking distance back up to 3k per day. It was a bit of a mission when some days I wasn’t reaching 1.5K. Today, I managed a 4.5 flat walk on the beach and, more importantly, saw the daily average over the past 12 months get to 3k per day. So, I celebrate a win for as long as it lasts. I make clip-on pouches for my iPhone so that I always carry it to record my steps, and I recently purchased a Smart Watch that includes recording all my health data statistics. It is a new normal to track this stuff, and the NAC research Team is wondering if such data could help us predict ABPA flares etc.
For me, my faith in the sovereignty of God is paramount in keeping me focused and moving forward.
“He knit me together in my mother's womb. My days are ordered by his hand.” Psalm 139.
I have been saved by Grace, by Christ alone.
Yes, a number of my medical conditions could/will contribute to my death; we all die at some point, but I can live the best life I can now, knowing that God still has work for me to do.
“This world is not my home. I’m just a passing through.”
Talking with others on Teams Video and reading posts or stories on Facebook Support or the website all add to helping me keep positive. (At least most of the time) Hearing other people's stories helps to put my own back into perspective … I could be worse. So, as best I can, with the Lord’s help, I hope to encourage others to keep walking on the difficult road you sometimes find yourself on. Yes, it can be very difficult at times, but look at it as a new challenge. We are not promised an easy life.
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The Benefits of Peer Support
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Living with chronic and rare conditions such as chronic pulmonary aspergillosis (CPA) and allergic bronchopulmonary aspergillosis (ABPA) can be a daunting experience. The symptoms of these conditions can be severe and have a significant impact on a person's daily life. The journey can be lonely and isolating, and it's common to feel like no one understands what you're going through. This is where peer support can be incredibly valuable.
Peer support is a way for people with a shared experience to connect and share their stories, advice, and coping strategies. It can be offered in various forms, including online support groups, peer mentoring programs, and in-person support groups. It allows people to feel understood, validated, and supported in a way that other forms of support cannot offer.
At the National Aspergillosis Centre (NAC), we understand the importance of peer support for people living with aspergillosis. While we offer advice and guidance on how to manage your condition, we recognise that much of the support comes from those with a lived experience of the condition.
Our virtual patient and carer support meetings are an excellent example of peer support in action. These meetings are hosted on Microsoft Teams twice a week and are open to everyone, not just those who are patients of NAC. These meetings provide a safe and supportive space for people to connect with others who understand what they're going through. They allow people to share their experiences, ask questions, and learn from others who have lived with the condition for a longer period.
Through these meetings, patients gain insight into coping mechanisms and strategies that help others live as normal a life as possible with their condition. We have seen many of our patients build lasting friendships with people who understand what they're going through.
So, if you are living with any type of aspergillosis, our peer support channels can be a valuable resource. Connecting with others who share your experience can provide benefits that are difficult to achieve through other forms of support. Our virtual patient and carer support meetings are an excellent place to start, and we encourage you to join us and see the benefits of peer support for yourself.
You can find out the details and sign up for our meetings by clicking here.
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Talking to Friends and Family about Aspergillosis
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It can be hard to talk to friends and family about aspergillosis. As a rare disease, few people know about it, and some of the medical terms can be quite confusing. If you’ve been recently diagnosed, you might still be getting to grips with the disease for yourself, and learning about how it will affect your life. You might also run into preconceptions or assumptions about fungal disease that aren’t particularly helpful.
All in all, these are tricky waters to navigate, so here are some things to consider before talking to someone about aspergillosis for the first time.
- Get to grips with aspergillosis yourself first. Particularly if you’ve recently been diagnosed.
You might not ever know all the answers, but having an understanding of your type, your treatment and what aspergillosis means for you will help.
- Pick a good time and place. Being able to talk one-to-one, in a place where you won’t be interrupted, is a good first step.
It’s also a good idea to choose a time when neither of you will have to rush off. Pop the kettle on and settle in.
- Be patient. Your loved one or friend probably won’t have heard of aspergillosis before, and might struggle with the different medical words, so give them time to digest what you have told them and ask questions if they need to.
Try not to get frustrated if they don’t react in the way that you’d hoped. They might be very sad, when what you need right now is someone to be strong. Or they might brush it off or make light of it, when you want them to understand that aspergillosis is a serious disease. Often people need time to go away and think before coming back with offers of support, or with more questions – let them know that that’s ok.
- Be open and honest. Talking to someone you care for about the disease is not easy, but it’s important that you explain how aspergillosis is likely to affect you. You might feel tempted to downplay things, but being honest can help in managing your friend or family member’s expectations in the future.
Some people find the Spoon Theory helpful in explaining chronic illness. In short, spoons represent the energy needed to get daily tasks (getting dressed, showering, washing up etc.) done. People without chronic illness have an unlimited number of spoons each day. But people with a disease like aspergillosis only get, say, 10 spoons on a ‘good’ day. Using this example can help to explain how living with aspergillosis effects all areas of life.
- Let them in. If you are talking to someone close to you, inviting them to learn more or share some of your experiences can be very helpful. You might want to invite them to come to an appointment with you, or visit a local support meeting.
If they want to learn more, or ask questions you don’t know the answer to, useful resources are available online. For example, did you know that we have a Facebook group just for family, friends and carers of people with aspergillosis? Lots of pages on this website can also be very helpful, so feel free to pass on the link (https://aspergillosis.org/).
- Be yourself – you are not your disease. There is so much more to you than aspergillosis, and your friends and family should know that too. But talking about it could mean that you get a little bit more support or understanding from those closest to you, which is never a bad thing.
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Medical Alert Paraphernalia
[et_pb_section fb_built="1" admin_label="section" _builder_version="4.16" global_colors_info="{}" theme_builder_area="post_content" custom_padding="2px||2px||true|false"][et_pb_row admin_label="row" _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content"][et_pb_column type="4_4" _builder_version="4.16" custom_padding="|||" global_colors_info="{}" custom_padding__hover="|||" theme_builder_area="post_content"][et_pb_text admin_label="Text" _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content"]Medical identification items such as bracelets are designed to inform healthcare professionals of conditions that may impact treatment in an emergency where you cannot speak for yourself.
If you have a chronic condition, food or drug allergies, or take medications such as long-term steroids or anticoagulants, they may alter the treatment you might receive, and it is imperative that healthcare professionals know and can act accordingly. In a situation where you may be unconscious or unable to speak, a medical alert can provide vital information regarding conditions, medications and next-of-kin.
What medical alert items are available?
Many different medical alert items are available, the most common being a bracelet that is worn and easily identified in an emergency.
There are a number of reputable online companies where you can purchase a medical alert bracelet, a couple of which are listed below. Please ensure when purchasing online that the company is legitimate and that their jewellery will be recognised by the healthcare professionals.
https://www.medicalert.org.uk/collections/
https://www.amazon.co.uk/Medic-Alert-Bracelets/s?k=Medic+Alert+Bracelets
Lions Club Message in a Bottle
Lions Clubs Message in a Bottle is a simple but effective way for people to keep their basic personal and medical details where they can be found in an emergency on a standard form and in a common location – the fridge.
Message in a Bottle (known within Lions as MIAB) helps emergency services personnel to save valuable time in identifying an individual very quickly and knowing if they have any allergies or take special medication.
Paramedics, police, firefighters and social services support this Lions life-saving initiative and know to look in the fridge when they see the Message in Bottle stickers supplied. The initiative provides peace of mind that prompt and appropriate medical assistance can be provided, and next of kin/emergency contacts can be notified.
How to obtain a Message in a Bottle
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Aspergillosis and the benefits of gentle exercise – a patient’s perspective
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Cecilia Williams suffers from aspergillosis in the form of an aspergilloma and Chronic Pulmonary Aspergillosis (CPA). In this post, Cecilia talks about how a light but regular exercise regime has helped improve her health and wellbeing.
I downloaded the exercise guide (available here) in September this year. My oxygen levels had been dreadful, and I wanted to do some form of at-home pulmonary rehabilitation. I was surprised that the exercises in the programme were to be undertaken daily, as previous pulmonary programmes at the hospital were only three times a week. However, this programme was a lot simpler.
I do a stretching routine for a few minutes before the exercises, and I have now introduced 2.5kg weights, but I would do them without weights when I first started. I started at the lowest number of reps for the seated and standing exercises and have gradually increased to the recommended sets. I take my time to do the exercises as I can get breathless, and the time it takes depends on the kind of day I’m having. I break the 30-minute step into two; one first thing in the morning and one after lunch. If I go for a walk outside, I just do the other exercises and no step routine. I make a conscious effort to concentrate on my breathing as indicated on the chart. I use the breathing techniques recommended by Phil (National Aspergillosis Centre Specialist Physiotherapist, video available here), which has been my go-to for getting my breathing back to normal.
When I started this programme, my oxygen saturation levels were poor. I was breathless for long periods, and I would suffer all day with terrible nasal congestion and postnasal drip - I was forever steaming with menthol crystals. Incorporating the exercises and breathing techniques into my daily routine (first thing in the morning in my bedroom with the windows open) has had a profound effect. My congestion clears easier without steaming. I can take deeper breaths and hold my breath for longer. I have noticed the time it takes for me to recover from episodes of low oxygen levels and breathlessness has also improved. I do all the exercises on the table; the balance ones are essential, and with time and practice, I am improving - though I haven’t started doing them with my eyes closed – I am not there yet! I hope that writing my account of the benefits even the lightest of exercise programmes has gives others confidence and encouragement to undertake an at-home exercise programme.
If you want to know more about exercising with aspergillosis, our Specialist Physiotherapist Phil Langdon has a talk available via our YouTube channel here.
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National Aspergillosis Centre (NAC) Patient & Carer Support meeting: July 2021
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[et_pb_column type="4_4"][et_pb_text admin_label="Text"]Our support meetings are informal and designed to provide participants to chat, to ask questions and to listen to some expert opinions on a variety of subjects related to aspergillosis in some way - you can often ask questions too. No-one need go away without their questions having an answer from the NAC team.
This month we had a talk from University of Manchester & Manchester Fungal Infection group (MFIG) researcher Jorge Amich Elias on his research into new ways to treat aspergillosis - this one even has a medication ready to go!
We also had an informative talk on the important subject of Power of Attorney from NAC team member Lauren Amphlett.
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Palliative Care - Not What You Might Think
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Chronically ill people are occasionally asked to consider entering a period of receiving palliative care. Traditionally palliative care was equated with end of life care, so if you are offered palliative care it can be a daunting prospect and it is entirely natural to think that your healthcare workers are preparing you for the final stages of your illness. That is not the case.
End-of-life care usually revolves around making what time you have left as comfortable at possible. Increasingly palliative care does much more than that - the NHS information page on End-of-life care includes the following exerpt:
End of life care includes palliative care. If you have an illness that cannot be cured, palliative care makes you as comfortable as possible, by managing your pain and other distressing symptoms. It also involves psychological, social and spiritual support for you and your family or carers. This is called a holistic approach, because it deals with you as a "whole" person, not just your illness or symptoms.
Palliative care is not just for the end of life – you may receive palliative care earlier in your illness, while you are still receiving other therapies to treat your condition.
When we have spoken about palliative care to our patient groups here are some of the comments:
Palliative care can be very helpful. One individual I have worked with was very weak when we first met a few years ago after a very active life. He could barely speak. He was referred to a local palliative care team at a hospice where they were able to offer a variety of activities, holistic treatments and socialisation. He is now much better and a very chatty man, moving with a much better quality of life.
they introduce calm and certainty into a situation where neither are usually present.
I can’t recommend being referred to palliative care enough. Please don’t assume palliative care and end of life care is the same.
Palliative care is delivered by a range of medical professionals so you can make enquiries via your GP or hospital specialist. It can be delivered in a number of settings - in a couple of examples we heard about recently a local hospice provided support to achieve personal goals to live well - for the patient and their carer and family. It made a huge difference to the lives of the people concerned.
Hospice UK
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