“You sure you’re not getting obsessed with your bits”? A GP said this to me once.
“I think we discussed this last time how you’re maybe getting obsessed with your blood sugars”. A Diabetic Nurse said this to me once.
“I think the pain must be psychological then”. A GP said this to me once.
Last week was a very testing week for me, but at the same time also a very satisfying one. You see, I got some help and answers regarding two long term health conditions that I currently suffer from(two amongst about half a dozen). A sense of vindication flowed through my veins the other evening as I walked to get the tram home after seeing this nice physio lady. My rib pain was not in my head as the GP in the third quote above had suggested to me a few years previously, because I had just had it explained to me as to why I was possibly getting such pain. It feels at long last like some weight has been lifted off these very weary shoulders of mine. I am an expert in suffering from complex health problems, you name it I have probably had it or currently still do. The sense of isolation I have felt has been truly heartbreaking at times. The feeling that I was alone, drowning in quicksand as my best efforts to get better continued to fail. This past week has given me a renewed sense of hope though, hope that there are indeed some people out there who can make me feel better in the near future.
I was aged twenty-one living away at University when that first disgusting quote above was said to me. On my way home I kept fighting back the tears as I continually replayed it in my head again and again. There I was needing to urinate literally every ten minutes and in absolute agony when I went, and all she could say was that unsympathetic comment that was no doubt linked to her seeing on my medical records that I suffered with Obsessive Compulsive Disorder. At the time I wanted to swear at her but the illness I had made me too weary for any of that. I just remember strongly rejecting this suggestion in disgust and walking home all upset. My degree was going up the swanny and what I needed was medical people trying to help me, rather than those holding prejudicial views about me just because they were aware that I also suffered from a mental health condition.
I am not one who likes causing a scene or being nasty to people, nevertheless two and a bit years later I strongly put the record straight when I saw this female GP once again. I had endured an absolute living hell since the last time I had seen her. After horrendous pain and extreme anxiety after being told it might be prostate cancer, the final diagnosis was a condition called chronic bacterial prostatitis. As Urologists to my dismay at the time seemed to know very little about this illness, it was up to me to educate myself about it all. I joined a self-help group on the internet and read tonnes of literature about Prostatitis. I can remember seeing this junior Urologist at the hospital once and me even knowing more about it than him…..UNBELIEVABLE! I felt alone as well as totally exasperated back then, suffering from a health condition that seemingly not that many people knew about. I only got back to University through fighting. Continually fighting for something over an extended period of time though can eventually make you feel completely worn out. I was relieved to be finally improving from this nightmare of getting prostatitis, but to this day I still hold a grudge against this female GP who insinuated about it all just being in my head!
A year or two later I saw a Diabetic Nurse at a regular diabetic check-up clinic. This lady seemed nice at first I thought. She seemed helpful and answered my questions as best she could. A few weeks later I decided I would ring her up because I had a quick question about my diabetes that I wanted to ask her about. All I can remember about that telephone conversation is me being overcome with fury when she uttered those infuriating words in the second quote that I have listed, the ones about me ‘maybe being OBSESSED about my blood sugars’. Yes, I asked lots of questions and wanted to get my diabetes as well managed as I possibly could, but in no way did this constitute me being obsessed about about my diabetes. How could she say such a thing about me after only speaking to me twice for about ten minutes? I cannot prove this but I am adamant that she only said this due to being aware that I suffered with OCD. I say this especially because I remember her remarking upon the fact that it said in my notes that I suffered with OCD. You have no idea how patronised her accusation made me feel. I never contacted her again for anymore support after that unpleasant phone call that day. I may have OCD but it does not define my entire being or personality. I will not have my mental health condition used against me like that!
I have suffered with contamination OCD for about the last twenty-five years. At its worst it can be an absolutely devastating illness to suffer from. It has made me contemplate suicide numerous times. In the last few years I have also felt the enormous emotional suffering that depression can give you as well. Even though my dear Mother has been immensely supportive throughout all of my mental health struggles, I have also felt alone many times. Like with many things in life, people not in the same boat as you can only emphasize so much. I have longed to speak to a person who has the same kind of fears and phobias that I have. Finally, to my great relief this did indeed happen on social media about two months ago. It happened sort of by mistake because we had been following each other on there for about the last two years but never realised we had this same phobia in common. The more this person and I revealed details to each other about our OCD, then the more we could not believe just how similar our thought processes were. Away from the OCD, we also seemed to have lots of other stuff in common too which has made us both laugh. A few times I have had tears in my eyes whilst reading her messages as she has emotionally talked about her OCD past. I have been so moved by her because I am that person now, the one she was a few years ago. I am a shadow of my former self at the moment, completely imprisoned by my OCD and desperate to break free from the chains of this crippling illness . I can talk to her whenever I am having a contamination flare-up and do not worry that she will think that ‘I am off my head’ at some of the stuff I tell her. Therefore, I now no longer feel quite as isolated as I once did regarding suffering from OCD. I feel like a protective older brother towards her, I feel like I have made a friend for life!
Last summer I remember walking home from my doctors with tears of utter devastation in my eyes. After two years of differing medical opinions, I was now having to face the depressing reality that I definitely did have an unpleasant condition in my lower legs called lymphoedema…..FOR LIFE! I already had enough on my plate as it was health wise. I just felt so fed up at now having another health condition to cope with until the end of my days. What made matters worse was that there seemed nobody out there to help me or even just talk to about it. The Vascular Surgeons who I saw were useless in terms of offering any real support to me. At the start of it all I saw three GPs who even failed to correctly diagnose me lymphoedema, so I was not going to get any help from them either…argh!
About a month ago though a Lymphoedema therapist followed me back on Twitter. I remember sending her a brief question about lymphoedema in a tweet I sent her, it was sort of a ‘test the water how friendly are you tweet’. To my relief she was indeed very friendly and helpful in her reply. Fast forward four weeks and this lady has been utterly amazing with me. I would even go as far to say that her altruistic way with me(wanting to help), has helped restore my faith in the goodness of humankind. I have not payed this healthcare professional one penny and yet her advice about how to best cope with lymphoedema has been consistently brilliant. She has suggested things to me that I had never even thought about, eg. raise my legs in bed, soak my feet in epsom salts. I was fed up being the only one that seemingly knew anything about lymphoedema. It feels like such a relief to have come across somebody who knows more about it than me. I hope to see this person one day so I can personally thank her for being so kind and helpful with me. I am sure this lady in question is not aware just how much her words have made me feel less depressed about suffering with lymphodema, she has been a superstar with me!
I reckon I have had sore ribs or a painful sore right rib area, for at least the last seven to eight years. As the years went by I tried telling various medical people about this with varying degrees of success. The ribs definitely feel more sore since I had my gallbladder taken out(I think this is unrelated though…perhaps). About a year ago I knew I needed to try and sort this issue out due to the extent that this soreness was massively impacting upon my life. For example, I cannot take certain foods or medication due to this rib area/muscles stinging when I do. This really depresses me because it means I am currently unable to take anti-inflammatory drugs to help my pelvic pain or medication to help my OCD. That infuriating GP in the third quote above, just thought this pain ‘could be psychological’ because he could not work out what it really was. He did not know what it could be so thought he would then blame my OCD rather than his lack of knowledge….IDIOT. I saw an Osteopath after him who could not work out why this area was sore either. At times I even got to the stage where I pressed my sore ribs really hard, purely just to prove to myself that I was not imaging it like some insinuated.
It therefore a massive relief when this recent physio did not just shrug her shoulders when I mentioned this sore rib issue to her. I half expected her to say that she too did not have a clue about it, just like so many of the other ‘non believers’ have. She told me that she thought it was do with my sore pelvic issue. You have muscles all around your ribs and she thought my sore pelvic issue was like twisting and pulling at my rib area, thus accounting for this soreness that I have. She also mentioned how there was hardly any muscle to my right shoulder so this would not be helping things either. Upon hearing her explanation I felt like screaming “hallelujah” in relief. When I got home I thought about all those people who had suggested to me that this rib pain was ‘just in my head’. I felt like ringing them all up the day after and telling them all to ‘GO F THEMSELVES’, this is how angry the discrimination towards my mental health history has got me. Again, I’m a clever guy who just happens to suffer with a mental health condition as well, it does not mean my OCD dominates everything I say or do.
(TWO OR THREE WEEKS LATER).
That was meant to be the end of my blog, but I stopped two thirds of the way through it and in the meantime I am now left feeling less positive about things once again. Regarding trying to get physio help for my pelvis, ribs and shoulder, I am in the middle of trying to find somewhere else to go. The lady was nice and she seemed very knowledgeable but I had a OCD contamination flare-up whilst at the sports centre(where she was at) which means I cannot go there again. It was a 10/10 on the anxiety front so there is no way can I consider going to the same place at the moment. I may reconsider this once I start getting help for my OCD but somehow I doubt it. I was also in agony afterwards to do with a pelvic exercise she had me doing. She hardly touched me though and so this is another thing that continues to worry me from that day. Looking for a specialist pelvic physio is like looking for a needle in a haystack. Then I have all the OCD stuff mithering me when looking to go elsewhere. I have emailed six physios and the experience has been mentally exhausting. I need to find somewhere soon so I can stop worrying myself silly that my aches and pains will always be with me like they are now. I do not need a physical cure, I just need to improve enough to get my life back and to enable me to lead the life that I want to lead.
Mental health wise, my referral for help is taking forever. I was referred in December and still no assessment appointment has been forthcoming. It is coming soon though I have been told, it can’t come soon enough.
I wanted to write this blog for several reasons. I wanted to inform people who have never experienced any serious health issues, just what it can be like for those people like me who have….and for those like me who are still suffering. At times I have felt so lonely, so helpless, so desperate, that ending my life did feel like the easiest way out. However, this would mean they have beat me and won if I ever did that, so I will never do that. The feeling of isolation I have felt at times during my health battles has been horrendous. What has not helped through the years is having my character questioned when suffering and asking for help. I am sure some of you reading this blog will have suffered similar mental health prejudice to the examples that I mentioned in the above. It gets me so angry when I think about how those people behaved with me. However, good people do exist out there and they have helped restore my faith in humanity somewhat. My fellow OCD sufferer that I discussed has helped me enormously. A lymphoedema therapist came to aid so unexpectedly and made me feel like I was no longer on my own with this unusual condition. A Physiotherapist confirmed to me that my rib pain did have explanation after all. Just a little bit of human kindness and heartfelt empathy is all that it has taken for my suffering not to feel quite AS HEARTBREAKING AND SOUL DESTROYING…….AS IT ONCE DID!