Person with ME
Pa


 

I was a 37 year old, response police officer and active mother of 3 children, when I fell ill. I was a runner of up to 7 miles each night as I was training for a 1/2 marathon. I rode motorbikes, loved adrenalin, my job, being fit and active. I suffered from severe migraines but other then that I was healthy.

I then underwent surgery and 3 days later I contracted a virus. I suddenly became very weak, breathless, shaky and couldn't function at all. I left hospital to begin what I thought was a recovery from surgery at home.

11 days post surgery I was rushed into hospital with chronic chest pain and not able to breath. I was subsequently diagnosed with multiple Pulmonary Emboli, in both upper and lower lobes in both lungs.

I was discharged 10 days later with blood and pain treatments.

I couldn't move without sever symptoms, even walking to the toilet left me exhausted and climbing the stairs was equivalent to me having ran the last mile of my 7 miles flat out! It made no sense but I was told I should get better.

My sergeant visited me with messages from my inspector of "They're getting pissed off with you" "They don't believe youíre ill" and "If you don't come back they will begin "Unsatisfactory Performance and Attendance Procedures against you and you will loose your job". My inspector visited my home and issued me an official warning to return to work.

After 6 months I went for a 2 week stay in the police rehabilitation centre, where they confined me to my room for the first week as I had a severe virus and put me in a wheel chair as I was so weak and passed out in the dining room.

Within a couple of weeks of returning home I was forced to return to work. I was in so much pain, so weak, nauseous, suffered severe cognitive dysfunction, shaky, out of breath etc, that every single minute was a struggle. I was still on 35 tables for pain and blood each day.

I worked 5 days a week of 4 hours on recoup duties, and every other moment of my life was spent in bed. One day I fell so ill while at work I had to be taken home by my sergeant, who passed the comment of "Its amazing that as soon as you get home you recover", because he had needed to help me into the car as I was so out of breath and distressed, but after the 20 min journey home my breathing had slowed enough for me to walk the few paces to my front door, where help was waiting. I wanted to prove to him that I wasn't "Just Lazy or Faking" so I went to work the following day and ended up having to be taken to hospital by another colleague.

I stayed at work for 8 months but they started proceedings against me anyway, as I couldn't work my full hours or response duties and they refused to allow me into another role or to go part time. With that my doctor refused to allow me to continue pushing myself beyond my limits and had diagnosed me with ME 6 weeks earlier.

I tried numerous things like eating more, when it didn't work I then ate less, sleeping more, then less. Drinking more, I tried workouts to see if I could push through, calming pills, vitamins and minerals, acupuncture, counselling, CBT. I've attended appointments which have generated 6000 miles in travelling to try and get myself better but nothing worked. I thought I was going mad!

I've not been able to return to work as my symptoms are still as bad. I'm mostly housebound, sometimes bed bound. I no longer do anything in my home or for my children. My partner does it all. I look after my own hygiene, although I do need his help if in the bath or shower and keep him company. It has eased my symptoms and kept me largely on a plateau. I can leave the house on occasions although I have to rest before and after. It also causes me to crash on occasions.

I have been through the ill health retirement procedure which went to appeal. It was concluded by the psychiatrist on the panel that I would fully recover from CFS/ME if I underwent CBT/GET, treatment from a consultant psychiatrist and treatment for my somatoform disorders that she thought were present. It would only be my lack of adherence to these treatments that would hinder my full recovery. So I was found disabled but not permanently. So no pension!!

I've not been paid for 2 years 2 months.

The procedures have reached stage 2 and  I have failed to fulfil the action plan of returning to work, so my last meeting will be scheduled with work for a week or twos time and I will either be sacked or forced to resign.

I was referred to the CFS/ME clinic and have received an official diagnosis of CFS/ME from the doctors there, they were lovely and very helpful but can offer no treatment other than CBT/GET.

My balance is now very bad and I fall often. I broke my ankle from a fall and ended up in a wheelchair at the same time my boyfriend broke his legs. I am very weak and try to keep my cognitive dysfunction to a minimum by not doing anything assertive. This enables me to be part of my family and enjoy the day, even if it is from the confinements of the sofa.

My boyfriend has been a lifesaver, he suffered 2 broken legs a short while ago. One of his legs was so badly mangled and de-gloved that it was only after numerous operations that he knew he would keep it. Since then he has been retired from the same police force because of his disablement caused by his injuries. He understands the loss I feel on all levels. What itís like to be scared and in pain, the feeling of being unless and worthless. He understands how the medication makes you feel and he loves me unconditionally. He makes my life bearable and I'm very lucky!

I have suffered from ME for 4 years now but I haven't given up on the hope of making a full recovery.

I am paying to see consultant early in the new year in the hope of taking his report to the police and asking for a further question of ill health to be considered as I really need my pension. I also need to leave the force with some dignity that will come from them acknowledging that I am suffering from a genuine illness that has rendered me disabled and that disablement is likely to be permanent, as the specialists have already stated in their reports. As I am not lying!

Once that fight is over I can then hopefully focus on the better things in life rather then my ME, my symptoms and how badly they affect me! I have accepted my illness and made all the changes necessary to cope with it as best I can. I'm not depressed and don't believe I ever have been because I know if I had a choice I would be the person I used to be, as I really loved who I was!

Thanks for taking the time to read this

www.investinme.org