I have been lucky enough to have experienced a modicum of travel and really enjoyed it. Now, however, I find that it requires so much planning it almost seems too much of a bother to even try. I would welcome any tips that others have found helped them to continue enjoying travel.
My abilities are challenging and very frustrating, as if I am sitting and relaxing you would not know there is anything wrong with me. A short walk to the kitchen however, would leave me leaning on a piece of furniture to recover my breath. Just standing for more than a few minutes will produce breathlessness, going up or down stairs requires an urgent rest at top or bottom. When sitting my Sats are around the 92/93 mark but if I am moving for more than a few minutes they can drop as low as 68. Very unpleasant. I do have a wheelchair but try very hard not to use it as In my past life I was in charge of a team of people and as I live in a very small community, am bound to run into people I used to work with and Manage. This makes me feel very self conscious and weak. Thus I don't go out much and when I do I choose to struggle rather than use the chair. I think the problem is mostly that the disability is an invisible one and if my husband pushes me to a shop and I then get out of the chair and start a slow meander round on my own two feet, it feels as if , and will look as if I am putting it on.
I try hard to do what I can and I don't do what I cannot
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Leavemebreathless
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Yes invisible disabilities can feel difficult to deal with and sometimes confusing for others. Sometimes we can feel like a fraud. But there are lots of people who use a wheelchair and also get out of it to walk slowly when they are able.
You don't say what medications you are taking and hearing that you de-saturate often to 68 is very concerning as you don't mention using oxygen. Unfortunately if we de-saturate to below 88 we risk damage to our internal organs. If I were you I would be asking my medical team about ambulatory oxygen which you could use round your home and at shops.
It is quite upsetting, though of course understandable, to hear you are so self conscious about your condition. I use ambulatory oxygen, and have had to use a wheelchair after serious hospitalisations, and my experience is that people are very kind. It's sad if we end up trapped at home because we fear looking weak. Better if possible to go out using whatever aids we need in order to make that possible, and with a smile on our faces. Some days are harder than others of course, but I like to think of myself as an oxygen warrior when I am out with my cylinder on my back - the more people see those of us who have health difficulties out and about, the more normal it becomes. Regarding this fear of looking weak, you could see if your local respiratory team have a councillor - many respiratory patients, especially newly diagnosed, have felt this self-consciousness and councillors will be well used talking it through.
I can't answer your original question Im afraid. I used to love travelling but I can't manage it now. It sounds like this is a big loss in your life - I would strongly suggest that you get more help, perhaps a medication review by your GP or respiratory nurse, as it doesn't sound as if your condition is being well managed.
I too am concerned at how low your oxygen levels drop with movement. If you aren't on oxygen therapy I think that you need to ask your doctor to refer you for assessment. If you are on it, a review is in order. As O2Trees said, saturation levels so low are putting your vital organs at risk of damage.
I was prescribed ambulatory oxygen 18 months ago and it really made a difference to my ability to walk around the house and to get out of the house and take short walks in a local park. It came with a trolley which can also be used as a bag. That was too heavy for me but my husband carried it at times. I find that people take very little notice of me when I'm out apart from children but that is just natural curiosity. I just smile and say hello.
If you want to travel in this country an oxygen supplier can arrange for a supply to be delivered to your holiday address. Going abroad is more complicated and I can't advise on that as I don't travel out of the country any more.
Do please get some medical help with your oxygen levels though and a general review of your condition. Best wishes.
You've had 2 very wise answers. I think people who know anything about hidden disability will not be surprised to see someone get out of a wheelchair and walk. People who don't know need educating. I've been finding the organising of holidays quite hard work, but last year I went on a coach tour, which picked me up in my home town. Years ago I thought coach tours were naff-something for old fogies, but I thoroughly enjoyed this one., with most of the organising being done by someone else. You really need to get your health problems sorted out, but once you've done that the world will be your oyster. xxx
My hubby and I used to travel abroad, mostly cruises. Many different countries, different cultures and amazing vistas..NOW we are discovering the beauty of our magnificent country! 😊 Within 3 hours drive we have Scotland 🏴 , the Yorkshire dales/coast and the glorious Lake District, 😀 my favourite place around Keswick.
No problems with flying out of the country because it's too much effort and to me would be a worrying and stressful experience 🙃
I'm too "long in the tooth " to be concerned what other folk think about me, disability or not! I'm more concerned about being myself and living life as best I can with whatever help is available.
I've left myself breathless now, time for Trimbow and a lovely 😍 cup of tea.
I hope you can leave behind any thoughts of looking weak, especially to people you worked with, they are not the ones gasping for air and hope you can overcome this as it really doesn't matter what they think. There are so many lovely places to visit in the UK and perhaps with the help of oxygen you would be able to enjoy getting out and about. I wish you well x
Hi there, great responses from 02Trees and CPDO16. Yes I agree your sats at 68 are really too low and as the others have mentioned oxygen therapy protects your vital organs from having to work hard and wearing themselves out! This is really important when it comes to good brain function because the brain can’t repair itself.
Being an oxygen user does take time to adjust to, this I know because I have been using oxygen for about 6 years now.
Can you be your own best friend and offer yourself good self care…?
Have you been offered a place on a Pulmonary Rehabilitation course? If you haven’t then do ask for a referral from your doctor. This type of course is great for learning to manage your condition in a positive way and leads to better fitness, mentally and physically.
Are your meds up todate, when we’re they last reviewed I wonder ? Speak to your GP about a chat with the survey pharmacist, they are brilliant.
You don’t say if you have COPD or some other respiratory condition. Though if you have COPD then there is an app called my mhealth which the local respiratory group can give you a link to. It has some useful information on to help self management.
Wishing you well and if you need more information do ask..
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