I wish I knew then what I know now ! I made the mistake of saying this to my GP the other day and she became rather defensive asserting that they always strive to give the positive outcomes and remain optimistic for their patients. However, I have wasted five years of my life because all of the debilitating conditions that I kept being told that I might be able to overcome. Except for my husbands love and care, I would not be here. I frequently felt as if I were crazy (I did become seriously depressed), a fraud, or that everything was my own fault, especially as I am a fat person. Looking back, I am only responsible for two things; I allowed things to go on for too long trying to cope with it independently, and I did not pin down the experts (so-called) to help me understand exactly how things were. I eventually accepted counselling-although I was very reluctant-and it was she who gave me the skills to be realistic and confident in asserting my needs. After having been unable to go out alone for more than two years now, I am finally accepting a motability package, and have purchased a second hand scooter, which although is not ideal, will allow me to get to a local shop or my friend's house on a good day.
I think the point I am trying to get across is to reassure other disabled and CPS people that the doctors are tied up by their feigned optimism, the universal worries of possible litigation, and financial (and time) restraints in the present day health service. Thus, please do not feel that you have to be a grateful and patient recipient, but stand your ground, and politely demand what you need. Living with pain is an isolating sub-existence that only another sufferer can understand.
I trained as an SRN so can see both sides of the case, but I was also forced out of my teaching career by disability and without any real source of information to cope or move on. I'm no longer embarrassed to be seen in a wheelchair, or for visitors to notice a commode in the bedroom, but ,oh dear, the waste of time and emotions. I hope this may inspire anyone who is going through the uncertainties I endured.
A final thought: a caring counsellor can be a lifesaver!
Written by
Heorte
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Dear Heorte, thank you for sharing your story. I'm very touched by how you've fought through some of the pain to leave the house. What made you decide to see a counsellor? When you were in the house, what kept you busy and how did you get throught it? Keep up the great work! And all the best!
I don't think your story is unusual, but thanks for having the courage to tell it.
I've just found out about the Self Management Programme for Long term Conditions. Its managed by Arthritis Care, who you would contact if you wanted to find out about courses in your area, but is designed to be relevant to any long term condition, and its supported in some way by the NHS, though not under their control. Its not medical, it doesn't change your illness, but it does give you the tools to be able to get the best our of life when living with a long term condition. I think its a brilliant programme.
Hi earthwitch just thought I would let you know that the arthritis care self management course I was offered locally, was cancelled with a promise of a new date to be arranged which sadly never happened.
They are doing a whole lot more trainings for trainers now, so hopefully the courses will be rolled out in more places once they get more trainers. Its worth contacting Arthritis Care again to get your name down if a course does happen in your area.
Hello Heorte, thank you for telling your story. Reminds some of us what we have been through. In fact I found another thing too doctors saying it's not worth talking about it, and" when she changes her attitude I am prepared to see her again." As you say it's more important to become assertive, than constantly being treated like frauds ect for years, such a waste of a persons life as you say. It took me years to realise they were treating me like a nervous uneducated imbecile, infact one doctor stated that what he was saying was above my intelligence to understand( he thought I would not know what the word he used mean't) So Heorte my advice would be stick up for yourself, be assertive complain if you have to they are only human beings as we are and if they were in Pain they would expect the best treatment available wouldn't they?
Thanks for sharing. We can all empathise.... And well done you for getting out there! Unfortunately, sometimes it's a stretch to be assertive when you are vulnerable, in pain and don't know what is actually available in terms of treatment! Sometimes getting the treatment is a waste of time.... And worse - makes you worse! Trying all those different pills, most of which made me really ill! The chiropractor who put me in the hospital..... The list is long. I do think doctors and healthcare workers have a duty to patients but I think they struggle themselves. My own GP had a disc problem in his neck and spent more time talking about his problems than mine! I know of a brain surgeon who was hopeless supporting his wife with a heart problem..... They are very human and fallible. Often, I think they just put up walls to keep themselves sane...
Thank-you so much for sharing your journey. May you continue upward and onward.
Although my hurdles are very different from yours. Its funny that you decided to post it at the very instant literally that I was having a moment of reflection. It has prompted me to ask myself questions. And maybe try to find an easier path for the inner me to walk.
There must have been an Angel in waiting to pop your post onto my screen.
I am a huge believer that things turn up when they are most needed.
Thank you Heorte, for posting about your personal experience 8)
I too, have had similar experiences, when dealing with health care issues related to living with rare long-term disabling health conditions. I came to the realisation very early on, that in communicating with health care professionals, family members, friends and Benefits Agencies, what is required is that even in the depths of depression and anxiety and continuous pain, we, ourselves, need to find the strength of resolve to assert our opinions and beliefs, in order to have our perceived needs met. We need to become experts in our own health. We need to continuously gather relevant information, researching on the internet, talking to interested healthcare professionals ( of which I have met many) learning and using the language of their specialism where possible, in order to communicate our needs and gather more information, and to access the relevant medical pathways in order to get those needs met.
Sometimes, it is possible to make even temporary links with people, (such as your counsellor or aspecialist consultant), to help us gather that strength and confidence in order to move forward.
Websites such as this, can also allow us to share our thoughts and experiences, which can benefit ourselves and other brave souls as well. Thanks again for sharing.
You are so right. Anyone in the health care field should be compassionate. I'm so sorry that you have been through so much. Hope you can find a caring and understanding doctor sweetheart!!!! xxx Mitzi
Hi Heorte, Sorry to be late in replying. I only use my computer intermittently. Thanks for replying. You have been through a rough time and it is so admirable that you have overcome many of the difficulties, although I know that many continue for you . Your positive attitude is inspiring . I also am a fat person now, and remain so now that I get so little exercise. I did have counselling during my period of depression, which was helpful. At that time I was not nearly so crippled by osteoarthritis as I am now. As always with this disease, some days are better than others. Eventually I will have to assert myself with the GP service but fear having my independence taken from me. It's horrible to need help but be afraid of it at the same time. it is a matter of overcoming emotion.
Pippi, I know what you mean and we can live in a spiral of self-accusation, sleep deprivation, pain and fear of the people who should be on our side but can't always. I've only just started learning that there are things to help out there but we need the oomph to ask, and that is not always possible. Have you anyone who can be positive and help put your needs forward?
Even the trivia of daily life can seem insurmountable when you can't get the coffee jar open
Please do keep asking, perhaps even write to your gp so you can get your needs across before attending the ten minute appointment slot? They want to support people in the community and we have to teach them how. Don't get tearful, get angry (at the disease) Good luck Honey.
apologies to folk who have replied - somehow I don't see my answers - mea culpa!
However, thank you all for your positive feedback and ideas. I have signed up for possibility of arthritis care meetings but nothing at all yet. It is great to have someone say they think I have a positive attitude I'm sure we all understand that it feels as though we exist in a negative halfway house, or purgatory - suffering for the soul LOL.
Anyway, I did want to say that I love the people on this website, their views and helpfulness, and ...oh... isn't it wonderful not to be alone?!
And I have learnt something new, despite all my own internet researching over years; this week I have been researching Hypermobility and although I don't need another label, I tick all the boxes! Yep, All the boxes! Nothing to be done this late on, but explains so much including why the feet operations I had (6) have gone wrong and the only excuse was "hypermobility syndrome" at the time they just said the deformations were due to extra long ligaments !
So, I will eventually be positive and go and ask for another physio referral and get more individual advice so that the exercises I try to maintain shouldn't do more harm in the future (especially trying to avoid the swan neck I'm getting
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