Changing My Outlook
Discussion
Just looking for some general advice and a digital shoulder to cry on. I have (stupidly) spent a bit too much time on ‘condition-related’ forums and I feel that it is doing me no good. As such, I won’t mention any specifics here. Just looking for a helping hand.
I have recently been diagnosed with a chronic life-long medical condition. I had gone undiagnosed for a couple of years without too much drama but the symptoms became so apparent I had to get it looked at. The prognosis isn’t great to be honest, with many possible issues and complications. The chance of major surgery is 75% in the next ten years, and once you’ve had one, typically you have a few. It seems that usually after diagnosis people start having a torrid time quite quickly. The cause of the condition remains unknown, so medication is largely guesswork and doesn’t really fix the problem. NHS literature says ‘the majority of people with the condition lead relatively normal lives’ and that it goes through flares and remission with varying degrees of activity, which isn’t as doom and gloom.
The condition can certainly be debilitating for many, though for me I am living a generally normal life at the moment. On a scale of 1 to 10 then pain I have suffered to date tops only at about a 5, and generally I am only in minor discomfort. The inconvenience that can be caused, I haven’t really seen, though it does seem to be progressing and getting worse over time. The discomfort and occasional pain is a constant reminder of what is going on, and reminds me that I have this. I do have a number of ‘features’ of the condition which suggests that it is well underway, though recent tests show (and have always shown) a low level of active disease.
I am really struggling with the uncertainty regarding my future. The main problem for me being that my specialist (and other medical professionals) have said it can range from an inconvenience to completely debilitating. More severe cases (one in ten people) result in recurring long stays in hospital and severe pain for long spells. He suggested that I am on the milder end of the spectrum at the moment, but said things can literally change overnight and there is no way to forecast progression, though if he had to bet he would say I will not be one of the ‘one in tens’. The condition isn’t life-shortening but does impact quality of life considerably in some cases. It also impacts confidence and enjoyment of life as the flares can be ‘embarrassing’ to say the least. Understandably some people withdraw from public places altogether.
The condition and the medication I’m on require some lifestyle adjustments; many trivial but some that feel like my freedoms are being taken. These include that I can’t go in direct sunlight for any length of time, revised diet (no biggy), limited alcohol and preferably none (considering just knocking it on the head altogether), regular invasive medical procedures, closely monitored health generally, monthly blood tests, increased risk of infection due to medication.
Having never seen me shed a single tear in over ten years, I have on at least five occasions in the past month literally sobbed like a baby for 15+ minutes in the arms of my better half. I feel guilty and embarrassed as, whilst she is amazingly understanding, she (righty) says “be thankful is isn’t…”, which is so true but I can’t seem to see it this way. My dad said “at least you have a chance at a normal life, many people don’t get that at all”. Again, I know this, but am still struggling.
Has anyone got any guidance or practical advice to alter my mindset in order to deal with what is now my real life? I have always been an overly anxious person and catastophise at the first opportunity. I have previously sought medical help on this though it never helped much (and I quit before I gave it chance).
On paper, things are great. Loving partner, no financial worries, caring family, relatively secure work and prospects. But the thought of this all changing, particularly now I have a real reason to consider it, I am really struggling with.
I have recently been diagnosed with a chronic life-long medical condition. I had gone undiagnosed for a couple of years without too much drama but the symptoms became so apparent I had to get it looked at. The prognosis isn’t great to be honest, with many possible issues and complications. The chance of major surgery is 75% in the next ten years, and once you’ve had one, typically you have a few. It seems that usually after diagnosis people start having a torrid time quite quickly. The cause of the condition remains unknown, so medication is largely guesswork and doesn’t really fix the problem. NHS literature says ‘the majority of people with the condition lead relatively normal lives’ and that it goes through flares and remission with varying degrees of activity, which isn’t as doom and gloom.
The condition can certainly be debilitating for many, though for me I am living a generally normal life at the moment. On a scale of 1 to 10 then pain I have suffered to date tops only at about a 5, and generally I am only in minor discomfort. The inconvenience that can be caused, I haven’t really seen, though it does seem to be progressing and getting worse over time. The discomfort and occasional pain is a constant reminder of what is going on, and reminds me that I have this. I do have a number of ‘features’ of the condition which suggests that it is well underway, though recent tests show (and have always shown) a low level of active disease.
I am really struggling with the uncertainty regarding my future. The main problem for me being that my specialist (and other medical professionals) have said it can range from an inconvenience to completely debilitating. More severe cases (one in ten people) result in recurring long stays in hospital and severe pain for long spells. He suggested that I am on the milder end of the spectrum at the moment, but said things can literally change overnight and there is no way to forecast progression, though if he had to bet he would say I will not be one of the ‘one in tens’. The condition isn’t life-shortening but does impact quality of life considerably in some cases. It also impacts confidence and enjoyment of life as the flares can be ‘embarrassing’ to say the least. Understandably some people withdraw from public places altogether.
The condition and the medication I’m on require some lifestyle adjustments; many trivial but some that feel like my freedoms are being taken. These include that I can’t go in direct sunlight for any length of time, revised diet (no biggy), limited alcohol and preferably none (considering just knocking it on the head altogether), regular invasive medical procedures, closely monitored health generally, monthly blood tests, increased risk of infection due to medication.
Having never seen me shed a single tear in over ten years, I have on at least five occasions in the past month literally sobbed like a baby for 15+ minutes in the arms of my better half. I feel guilty and embarrassed as, whilst she is amazingly understanding, she (righty) says “be thankful is isn’t…”, which is so true but I can’t seem to see it this way. My dad said “at least you have a chance at a normal life, many people don’t get that at all”. Again, I know this, but am still struggling.
Has anyone got any guidance or practical advice to alter my mindset in order to deal with what is now my real life? I have always been an overly anxious person and catastophise at the first opportunity. I have previously sought medical help on this though it never helped much (and I quit before I gave it chance).
On paper, things are great. Loving partner, no financial worries, caring family, relatively secure work and prospects. But the thought of this all changing, particularly now I have a real reason to consider it, I am really struggling with.
Great suggestion there from Biglips.
Here's my two penn'orth.
I too was Mr. Anxious, and I lost 26 years of freedom to anxiety/agoraphobia. I even studied psychology to approach the matter from the 'professional' angle. It didn't really help but nobody can take away my MSc!
However, a new technique, applied by a new doctor, equipped me to give the following advice.
A couple of years after my 'cure', I started with MS. This is also incurable, tends to shorten lifespan by about ten years, and can be very bad news.
Here's how I deal with it...
HTH
Here's my two penn'orth.
I too was Mr. Anxious, and I lost 26 years of freedom to anxiety/agoraphobia. I even studied psychology to approach the matter from the 'professional' angle. It didn't really help but nobody can take away my MSc!
However, a new technique, applied by a new doctor, equipped me to give the following advice.
A couple of years after my 'cure', I started with MS. This is also incurable, tends to shorten lifespan by about ten years, and can be very bad news.
Here's how I deal with it...
- What's going to happen will happen. Fretting about it will have absolutely no positive influence whatsoever.
- Constant worrying is physically and psychologically costly. It can contribute significantly to negative outcomes.
- Mourning your losses is perfectly normal, valuable and healthy. Just be aware that it's a phase that will end in time.
- Comparatively few people are utterly unable to say, "it could be worse". Count your blessings in the comparative sense
HTH
AdviceHunter said:
Has anyone got any guidance or practical advice to alter my mindset in order to deal with what is now my real life? I have always been an overly anxious person and catastophise at the first opportunity. I have previously sought medical help on this though it never helped much (and I quit before I gave it chance).
Acceptance and Commitment Therapy. It's many thing, but one part is about being mindful of what's going on and if it can just 'be' without needing you to do anything other than to notice that it's there. Like, you might notice you're thinking about asparagus, so you make a mental note that you're thinking about asparagus a lot, and that's taking you off course with what you were doing, and then carry on with whatever you're doing. While it's asparagus it's fairly harmless, but if what you're thinking about is death, destruction and the end of civilisation constantly, then you can start to address it from a slightly different angle. Sometimes the brain talks s
t to us and we dont notice it's doing itOne topic in particlar that's covered is experiental avoidance
There's a really really good (audio)book called Get out of your Mind and into your life by a chap called Stephen C Hayes. I'd recommend you give it a read, either hard copy, soft copy or audio
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