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Self-Care with major Physical illnesses

I have lived for several decades with serious physical illnesses (or conditions) -

Scoliosis, causing severe back pain

Sleep Apnea (diagnosed 11 years ago), causing debilitating daily fatigue - treatment & stimulant medication has moderately improved my functioning. Not to anywhere near a "normal" level, for someone without a Sleep Disorder (or a fatigue condition).

A bowel obstruction (tumor), with 3 major bowel surgeries (2 emergencies) - from which my body has never fully recovered.

My digestive system (which was disconnected for 6 months), has not worked effectively for the past 3 years - since my bowels were re-connected (stoma reversal surgery).

I also have Complex PTSD, from more than 2 decades of trauma.

 

Because PTSD is supposedly an "anxiety disorder" (so-called) - medical professionals have on several occasions attempted to "explain away" my physical symptoms as being "just anxiety".

This has stopped me from accessing adequate medical care, on several occasions.

 

The "just anxiety" was later found to be a life-threatening bowel obstruction (tumor) - which required immediate surgery. Then a 2nd emergency surgery, 3 days later (when the 1st went disastrously wrong). Then a 3rd bowel surgery, 6 months later to reverse the damage (& clean up the mess).

I now have 2 serious hernias, as a result of the bowel surgeries - wound split, extensive wide scarring, & hernias in the middle.

 

Have others experienced their physical illnesses (or medical emergencies) not being taken seriously - because of having a mental illness diagnosis?

How did you overcome these obstacles to receiving medical care (if you could)?

 

Self-care is difficult, when my food does not digest adequately - despite Probiotics & Gastrostop (when necessary).

I must run to the toilet with great urgency (Irritable Bowel Syndrome) - which is a cause of stress in itself, & makes working difficult.

Adge

 

160 REPLIES 160

Re: Self-Care with major Physical illnesses

Sorry, I don't know who to Tag into this thread.

I don't want to seem intrusive.

Adge

Re: Self-Care with major Physical illnesses

Hi @Mazarita @eth @Shaz51 @Appleblossom @greenpea @Sophia1 @Former-Member @Faith-and-Hope

Do you know anyone who can relate to these experiences?

Or who can suggest strategies for attaining better medical care (of physical illness)?

- & better self-care, despite physical challenges?

Adge

Re: Self-Care with major Physical illnesses

Hi @Adge ...,. 👋

 

Have you tried digestive enzymes ?  I 

 

@Wanderer, you have had to cope with a lot of physical challenges.  Do you have any suggestions for @Adge from your own experiences ?

 

We have knee issues in our family, and hypermobility.  I tend to avoid stairs when my knees are complaining, but Indo a lot of walking to build strength in the associated muscle groups.

Re: Self-Care with major Physical illnesses

Hi @Faith-and-Hope

Yoga classes have helped me to regain some of the flexibility lost from my surgeries.

Extensive scar-tissue 30 cm long & 5 cm wide made my tummy very inflexible - like having an iron bar down my chest.

I've never regained my abdominal strength, because the abdominal muscles are badly damaged  (3 times).

I have been taking Probiotics every day for the past 3 years - they help a bit, things would be much worse without them.

I'm not sure about digestive enzymes - are they something different?

Adge

Re: Self-Care with major Physical illnesses

Digestive enzymes help with the breaking down of the food you ingest @Adge, as opposed to probiotics being for health of gut bacteria, as I understand it @Adge.  A pharmacist can advise you better about them, but they may add in another level of digestive support.

Re: Self-Care with major Physical illnesses

Hello @Faith-and-Hope@Adge

 

Am just recovering from a realy bad sugar crash, still dizy and weak but coming round.

 

I used to take an enzyme for my pancreatitis obtained from a pigs pancreas. Forget what it was called now but could be an option.  (Creon) Just remembered.

 

I have found that while pain killers are ok for short term pain, (anything that heals withn a few weeks or maybe a month) they have been severly destructive over long term and have caused serious long term side effects that still make life a minefield.

 

I recently completed a pain management course and can only say that while the educational material was interesting and helpful to know, the word I would use to describe the final assesment would be railroaded.

 

Not sure I can give an answer on how best to live with pain, I guess I do my best to find a ballance between overdoing things and not doing enough. I find this can change with weather, mood, environment and lots of other factors so feel like am continualy learning and relearning but keeping active is very important.

 

Pain changes your life which is pretty hard to accept, it is always a sort of relief to meet someone who shares a similar situation and can understand without the frustration of trying to explain.

 

I have not had great success with medical help but then my pain problems are a management treatment not a cure issue.

It seemed a little strange having pain mangement taught to us by two young healthy people I doubt have any personal experience with long term pain. (long term)

 

How do I manage? Can't say I always do, I am dealing with significantly more than physical pain. While my pain is severe, (I rate it at an average of 7-8   24hrs a day every day without letup.) my other problems have overshadowed it by many factors and also exacerbated it.

 

When it is bad I use distractions, writing, reading, jigsaws work well. Something small, easy, something that takes concentration. I have thought of buying a rubics cube as well. This doesn't reduce the pain but does keep you from focusing on it. The forum has been a great help too.

A big trap is it tends to make you spend money in searh of distraction, so that one needs watching. Also found, indepth research into whatever I am dealing with helps me to better understand it, to read testimonials from others and feel proactive in managing what I have.

 

Have had to forget who I was and start to rebuild a whole new world that I can live in.

Is not easy and sometimes beyond hope but time carrys us forward, time that brings breaks and periods of hope. Even when we give up, time does not, and a new day will come, a new day when we will feel a little better and can stand once again, move forward, mental steps as well as physical ones.

 

I have learned to focus on one thing at a time, each step just the one step, not look too far ahead and not take on too much at once.

 

I have therapists that I see regurlarly now and I say what I feel, they have been a a great help.

 

Hope this helps, these are some of the things I do to cope.

 

 

Re: Self-Care with major Physical illnesses

Hi @Adge@Wanderer@Faith-and-Hope, anyone coming to this thread after me,

As some know, I have lived with Crohns Disease since I was 18 (now 56), as well as Bipolar 1 (only diagnosed much later, though I had been living with it for most if not all of my life). My younger years were a lot worse with these things, especially my 20s, when the Crohns was very active and I had not yet received diagnosis or treatment for my mental illness. I was very bewildered and vulnerable at that time, with so little understanding or even acknowledgement from anyone of what I was going through.

I find that physical illness and mental illness are closely linked, and can create a kind of feedback loop that can seem hard to escape, one feeding the other in a sometimes escalating way. For me this has made the experience of both so much worse, especially as a young woman, when I had very little experience or skills to deal with these things, and was much more dependent on doctors to take a very dominant role in deciding how things went with me.

I have found over time that doctors have often had little understanding of this interwoven dynamic. For example, gastroenterologists consistently ignored or thought little of my early complaints of depression, stress and anxiety, not seeming to realise at all that my physical illness might be causing or excacerbating mental ill health, and vice versa. One of them (a woman) once rudely told me that if I had a child I wouldn't have time to be depressed!  As an inpatient in hospital, medical staff have often seemed completely ill-equipped to deal with mental health problems in that context. This has led to me checking myself out of hospital twice during high anxiety/panic attacks in there. On one occasion this took place a day and half after surgery. On the other occasion this occurred at 4am. I had no-one to collect me and was just left to wander out alone on to the night street in that sick and highly stressed condition, where I had to use a phone box to ring a taxi. It seemed the main thing on both occasions was to have me sign the paperwork, relieving the hospital of any responsibility.

Similarly, most psychiatrists I have seen over time have behaved as though physical illness was irrelevant to my mental condition (luckily I have a good one now who does understand the connection). Especially as a young woman, I had many experiences that were the very opposite of helpful. 

I agree with the comment that taking a proactive stance in our physical and mental health treatments, and being as informed as possible, is highly desirable. Some doctors seem to hate it when patients consult 'Dr Google' about their health issues. Phooey to that! These days I seek out relationships with doctors that are more 'collaborative' than 'compliant', and have been lucky to find some now who will work with me like that, but it's taken decades.

Having said that, I am still yet to find a gastroenterologist who I find very helpful beyond the strict basics of medical/technical necessities, and I've consistently found them to be seemingly quite lacking in compassion. Not saying they are all like this, just that I've experienced a similar thing with so many of them. Because of this, and the trauma of my earlier experiences, I do not currently have a gastroenterologist treating me at all. This is despite having a chronic physical illness with no cure, that needs following up even when in remission. I'd better not get started about the idea of remission in Crohns Disease. I have had diarrhea pretty much every day of my life since I was 18, despite the fact that I am now officially in remission.

Having written all this, I realise that I haven't really answered your queries, @Adge. I hear and relate to your experiences though and am so sorry you have had to go through all this, and continue to have to live with it. I believe you are also working, which I find amazing!

I feel I have been really too ill to work my whole life, and have broken down out of employment so many times it's not funny, each instance of breakdown becoming harder and harder to recover from. The longest I've managed full-time employment was nine months when I was 17. Since then I have had possibly 50 jobs (including freelance gigs at times). Realising at a young age that I couldn't manage full-time work, most of my jobs have been casual, part-time or temporary. Even there I have struggled enormously and broken down again and again. In between I have been on the equivalent of Newstart with medical exemptions. Needless to say I have lived in often desperate poverty all my life too (which again doesn't in any way help physical or mental health). I've been close to homeless on two occasions. I have the disability pension now, since 2010, which makes life so much more bearable and viable. But it's taken a very long time to get to this better place.

Re: Self-Care with major Physical illnesses

Dear Adge @Adge I do have problem knees and feet from running .... no more running for this pea. Other than that I don't have any physical problems *touch wood*. You definitely need better health care professionals .... can you afford private health care? Even if it just the bare bones hospital to take care of the hospital expenses. I wish I could give you more advise but I honestly am not sure of where you can go next. Take care. Love the peaxxx

Re: Self-Care with major Physical illnesses

752BA9E3-7474-432B-8445-6B32D8C64092.giffor you @Adge

 Have you tried Apple cider vintage?  

Gut health is important. Marmalade jam seems to help me digest breakfast better. 

Sorry you’ve had to struggle with this ongoing plight. Just do the best you can ADGE - that’s all we can do 🌻💕

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