Tuesday, 23 April 2013

Welfare: Mental Health v Physical Health (I am not crazy...)

It's a long time since I posted; I basically lost heart after a care reassessment that wasn't signed off until my books were audited in January. That meant the process took 6 months in total. After that stressful period, extreme fatigue kicked in. I'll write a different post about the consequences of the care assessment at a later date. First I want to raise the issue of how mental health issues prejudice your physical care.

When my illness started in the autumn of 1996 I sought medical help. Intermittently, my legs would go dead from the waist down, and I started to experience extreme mental and physical fatigue, which made it hard to walk or engage in any activity. Additionally, I had sensory problems with sound and light, along with pins and needles in my feet and hands, even in my tongue. I also needed to see a dentist for the excruciating searing pain all across the left hand side of my face. I had become desperate as I obviously couldn't work; I was concerned about my girls and how we would manage financially. 

I was sent for a brain scan which came back clear, and all the neurologist did when I went to see him, after I explained my symptoms, was to make me breathe in and out very fast to see how it made me feel. Doing this can bring on the symptoms of hyperventilation, so I felt very dizzy and my hands and tongue tingled, as it would with anyone. The neurologist then declared my 'diagnosis' was one of 'panic attack'; I only wished that this was the case, and I cried in front of him because of it. It may have explained the tingling, but it did not go any way to demonstrate why I was chronically fatigued, my legs losing all feeling, or my weak/painful muscles. He wrote back to my doctor and said that he had diagnosed me with 'panic attacks'. I was not having panic attacks however; I've never hyperventilated. I gave up then and tried to carry on as best I could, realising that I was going to get nowhere.

The problems with my face continued. In order for the pain to subside, I would have to lie still for many hours, but even the slightest movement would exacerbate it. I kept visiting the dentist trying to get to the bottom of it. They removed a number of teeth, but it made no difference. So finally I made another appointment to see my dentist. Instead of my usual dentist, I was sent to the practice owner's consultation room. His examination made the pain even worse and I nearly jumped off the couch and I shouted out in agony. He then turned on me. He said: 'there is nothing in your face that could possibly cause that amount of pain'. He also accused me of just wanting to see the other dentist because I was apparently 'interested' in him, and said that I must have severe mental health problems. I felt distraught and cried all the way home.

Finally, my dear Mum paid for a private consultation with a Maxillofacial specialist, and within 5 minutes I had a diagnosis: it was 'Trigeminal Neuralgia', apparently spoken of as 'the worst pain known to man'. I was referred back to the NHS Maxillofacial clinic where I had an x-ray that showed additional problems with my jaw a I couldn't open it very wide. I was given a gum shield, and put on Amytriptaline for the neuropathic pain; conventional pain killers do nothing for this kind of pain. 

I was told however that it would take some time for the Amytriptaline to work. Unfortunately, due to this and the severity of the other symptoms, one day when my washing machine broke and I didn't know how I was going to pay for the repair, I had a complete nervous breakdown. I could no longer understand what people were saying to me or recognise any sounds, so for example when an plane went over the house, I would cower in terror. My girls, afraid I suppose of what would happen to them if I went into hospital, nursed me through the first few weeks until I was able to see my G.P.: Going to see my G.P. I later realised was a big mistake, but I had no choice. From then on in, any physical problem I went to my doctor about resulted in a referral to a psychologist or a counselor, and due to this neglect of my physical health, over time, my illness badly deteriorated.

I detailed the last occurrence of being referred to a psychologist in a blog last year. Because of the way I was treated 4 years ago when I approached my G.P. for help with a new physical deterioration, spasms, my experience was submitted to 'NICE', as yet again I was sent to see a manipulative pain specialist and psychologist as part of a project named 'IMPACT'. I was told that my torso spasms were 'panic attacks', that, and I quote from the pain specialist's letter: 'she seems to think she is a film and music technologist'. I told her that I had delivered music and film workshops in the community. I did have a dual honours degree: really, how dare they say that I'm some kind of fantasist without any proof! Lots of other totally unprofessional things to say. Over a series of sessions with their psychologist, they tried to persuade me to join their 2 day programme which ran over 8 weeks. I always refused; if I was able to do that, I would be able to work. In the end, I was told that unless I agreed to attend this course (mornings spent in the gym and afternoons in lectures about pain: lol!), they would block any further appointments at the Rheumatology clinic for physiotherapy, counseling, or other specialists. I told them it would be impossible for me to attend because of being so ill, and I hobbled out in disgust (although the story is rather more in depth that this)

Since then, I've made my own arrangements for any counseling for pain that I needed, and I self-referred to a physio. 2 years ago the physio said that my clicking and grinding joints were a result of my weak muscles, and that they would only deteriorate; eventually it would be result in being permanently wheelchair-bound .

These problems have become worse over time: joints feel like they've come out of place, then eventually click back into place, which is very painful; my knees are especially affected. Consequently, I made an appointment with my G.P. in February to outline these difficulties, and she said that she'd refer me to a specialist; I presumed that the appointment would be with a Rheumatologist or with Orthopedics. I specifically told my G.P. that I did not want a referral to a the IMPACT service or a psychologist.

When the appointment letter arrived dated March 14th, the first page of it said: 'Information about your psychology appointment'. The second page was the date of the appointment at the IMPACT clinic. The envelope also contained a 'First Assessment Questionnaire Pack'; a psychological profiling document that I had filled in before. As you can imagine, I was absolutely livid! A fortnight afterwards, I received an appointment for a bone scan, so I thought that I'd wait for my doctor to receive the results of the scan and then broach the subject of the psychology appointment.

Just over 2 weeks ago, I woke up and tried to get out of bed, and my left knee could not take the weight. Something had come out of place in the night; it was absolutely agonizing, and I could barely get around the house. I couldn't straighten my left leg at all. Since other parts of the body were trying to compensate when I tried to walk with a bent leg, and being that they are also weak, it has had a detrimental affect on other all other joints/muscles. With complete rest, it started to get slightly better from Thursday last week, but I still can't straighten my leg.

My carer took me to my G.P. appointment yesterday. I told my G.P. about the psychology appointment, and she couldn't understand why the IMPACT clinic had sent it, but said that she would ask her secretary to look into it and contact me. My G.P. said that she had referred me to a Fibromyalgia clinic. I told her firstly, I have never had a formal diagnosis of Fibromyalgia, and that I needed an appointment with either a Rheumatologist or Orthopedics. She said that I definitely could not have an appointment with an Orthopedic specialist and that the Fibromyalgia specialist would refer me on to another specialist if needed. She examined my knee and she said that it was the 'Meniscus' - basically the cartilage - which can pop out of place and tear. She said to self refer again to the physio, and then wait to hear about the other referral. 

This morning, my G.P.s secretary telephoned me and said that I was given an appointment with the IMPACT service because the Fibromyalgia specialist had a 6-month waiting list, and even then the specialist had said she didn't know if she could help me (funny; she figured that without seeing me). In any case, the secretary said, the IMPACT service was exactly the same as the fibromyalgia clinic. So I explained to the secretary what I said to my G.P.: I didn't need a psychologist, I needed a specialist for a physical problem! I said that I would make my own arrangements for physio, and that if the problem did not clear up, I would pay privately to see a specialist. I told her to cancel all other appointments.

I put the phone down and promptly burst into tears. I had contacted my daughter about her partner who had suffered for years like me with a knee problem; exactly the same symptoms, but with more swelling than me, except of course, because he was otherwise a healthy person with good muscle tone his body could compensate. Eventually it became too painful, so he went to his G.P. for an examination, and the doctor suggested an M.R.I. scan. Soon after, he had the scan. 6 weeks after that he saw and Orthopedic surgeon, and 6 weeks later he had an operation. He mentioned at the time to the Orthopedic specialist that he was afraid that his right knee was developing the same symptoms. The surgeon told him that it was OK; it was common since the other leg tries to compensate and that it would improve after the operation, which it did. Can you appreciate then, with both my ankles, my right knee, my hip joints affected, plus muscles that don't work and cannot withstand any pressure, how my body is being affected by the extra strain?

Over the last 17 years of illness, when faced with a new deterioration, the G.P.s I've seen have primarily referred me to clinical psychologists or counselors. When my spasms first started, even after the doctor saw the spasm, because I was crying about the pain, I was referred to a counselor for 'low mood'. I was not given the medication needed to help the spasm subside. It was only after the massive torso spasms started, when I was forced to go through a half hour psych evaluation with a G.P., where he shouted at me, refused to refer me privately, along with other awful unethical behaviour, that he finally gave in and allowed me to see a neurologist. Only then - years after the initial symptoms - did I receive the appropriate medication for the spasms and neuropathic pain.

I am very calm when I go and see a G.P.; I never raise my voice; I'm 'old school' having been taught to behave respectfully towards them. Even when faced with such unethical and bullying treatment, I have remained composed at all times. So why is this treatment meted out to me and others like me? Can you picture what it's like to go to your doctor with chronic physical symptoms, and each time being referred to a psychologist, or for years having treatments denied to you? By now, many people would have gone insane at such treatment. But I keep a cool head, because if I allow it to affect me, all that would be said is: 'I told you it was psychological'! No, I'm not allowed to become upset or angry like anyone else would be in my position: I have to behave perfectly. I have to exhibit even more strength than is psychologically possible. Since I am still quite sane therefore, I think it proves that my chronic symptoms are anything but psychological. 

I do understand that chronic physical conditions can bring about depression, and that this can also produce physical symptoms. For this reason, I have engaged with any therapy that's been offered to me, but mostly I've done it to try and prove to them that I had recovered from the breakdown. I once told a G.P. that if I am now mentally healthy - by their reckoning - I should also be physically well shouldn't I?! Ironically, I've had so much therapy now, that I'm quite sorted, and if I feel like I'm going mentally downhill slightly (usually after a physical deterioration), I refer back to notes and workbooks, or to an online CBT course called 'Moodgym'. It makes no difference though; I'm still generally considered as suffering from a 'somataform' illness. 

This is what happens if you dare go to your doctors with mental health issues: it follows you for the rest of your life. From there on in, doctors and consultants use it to explain all sorts of medical symptoms. You have to experience a physical crisis and receive much humiliation before they finally give in and direct you to the most appropriate consultant for your condition. They've even sectioned some physically sick people with as yet undiagnosed conditions; a close friend of mine - who did have a serious mental health problem - died because her doctor didn't believe she had a physical problem (She could hardly breathe and she refused to get out of bed saying she was too ill, so her husband ended up taking her to A & E after her doctor repeatedly refused to give her a home visit. After examination they told her she had apparently suffered a collapsed lung many weeks beforehand, so they admitted her immediately, but she died 2 weeks later of throat cancer). You hear time and again in the newspapers how people are fobbed off like this and end up dead. This is a serious matter and demonstrates how psychologists are dominating the medical profession. 

A torn Meniscus is not a life threatening problem; nonetheless, doctors should not block access to treatment for this painful condition. Being already mostly immobile, if it stops me doing even the small amount of walking that I am able to achieve at present, and then goes on to exacerbate the other joints over a long period of time, it could leave me permanently wheelchair bound a lot quicker than my physio suggested. And, if that happens, no doubt, I'll receive another referral to a psychologist....

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