I have myasthenia gravis and like many others, I often find myself with a little time on my hands so I thought I would sketch a snapshot (called a selfie these days) of what it is like for older people who are trapped by the insidious condition. The purpose of this text is not to seek sympathy or pity as I am way passed that stage. Perhaps though, empathy will come naturally from some readers.
As an 80-year-old, I am now in my fifth year with MG, but as a 76-year-old I was a very active and busy person (or so I am told by my children) who never really had enough hours in the day to do the things that interested me, you may say I thought I was unassailable. Since retirement, I have had the good fortune to have a good few holidays a year, which in itself produced a back log of things to do at home - always busy.
It was here during our 2011 holidays (no, I am not boasting) that the wheels started to fall off my life wagon. It was in the early days of 2011 that I started to feel uncomfortably tired and indeed some simple physical tasks ended up with me sneaking away to the sofa and hiding behind a newspaper to recover. We had a cruise booked to visit Iceland and Norway, which we had saved for and were very much looking forward to. On commencement we called in at Dublin, where I developed a sore throat. By the second day, I had the mother of all infections which plagued me for the duration and spoilt the holiday - I just wanted to come home. Having recovered, we went to the very north of Scotland for a week, but on each outing, I just wanted to get back to my bed at the hotel and shield my eyes from any light. By this time I was reading with one eye closed.
To be brief, I was positively diagnosed with an advanced stage of myasthenia gravis and commenced a medication plan. After numerous stays in hospital, including whacks of IVIG, I clocked up some 65 days in 'captivity' where there seemed to be not a lot of knowledge or understanding of MG. So what's it like for a patient of 80 years to manage this condition? First of all, there are two of us as my wife, of the same vintage as me. Just because I have MG she is of course not privileged to be excused the usual aches, pains and difficulties of the elderly, so seeing to the many needs and requests of me is taking its toll.
Since being diagnosed with MG, I have been through a number of emotions; anger; frustration; grief; some self-pity, but probably the one emotion that is the most difficult is guilt. I am proud to say that my wife has been a great family and house manager over the years and I was fortunate that she didn't need to go out to work hardly at all. By the time MG had reared its ugly head, she had to come out of leisure and retirement. We were warned that both of us were in for a 'roller coaster ride' that may test us to the limit, but never once has she wavered although she said she preferred the 'roller coaster' at the fairground. Never the less, we have both found it very hard as it took me almost a year to stabilise with little choice but to stay on my own bed or the one in the hospital.
With all the adverse effects of the so many drugs, which to me, as someone who previously hardly took an aspirin, was quite alien, if not alarmingly so for a lady well into leisure and retirement, so what a culture shock to forcibly become a chauffeur, gardener, DIY expert, dispenser of multiple drugs and carer as well as coping with calling the ambulance in the middle of the night. I believe her when she confesses that in the first two years, she slept with one eye and both ears open.
Into our fifth year, we have now decided to 'play for a draw' and have become quite fatalistic about the condition - one good hour, one bad hour, one good day, one bad day. However, what we find most difficult is that everything we intend to do or plan to do has a "maybe" or "but" to it, hat is the dreaded nature of the condition.
I am at present out of a wheelchair, which is just as well as four years on masses of steroids has given me a had like a melon and the body of humpty dumpty. On a serious note, can you imagine a little elderly lady pushing an eighteen stone wreck around on some of our 'ill-maintained' pavements.
I am still not fully stabilised and I am now about to have a go with yet another drug, methotrexate. I am sure most readers have hoped that this time yet another drug will do the trick. At this stage, I will say how lucky I was to get MG at 76 years old. What a strange statement, you say, so I will qualify it. Lucky in as much as it must be awfully hard to have your activity and normality taken away at an earlier age. I think of the 'bread winner', the young mother or the juvenile who still has a long journey, even remission sometimes being only temporary.
This text has only really scratched the surface of my individual take on the matter. I have not written about the micro-happenings caused by medication like frequent toilet visits (I almost moved my bed into the bathroom) fighting for breath, heavy sweats, dribbling, sticky skin, the dreaded steroid induced diabetes and the often recurring crises.
Perhaps it is worth mentioning that at 79-years-old, I was coming to terms, accepting the situation and managing the illness when a cardiac surgeon informed me that he could not understand how I was shuffling around with a heart on the edge of extinction. If you choose to walk out the door, you will not make it to the bus stop. So within 12 hours, I underwent a 6 hour triple bypass operation.
Forgive my boasting but in spite of the MG (which seriously concerned the anaesthetist) I was told I had the 'constitution of a lion' - but strangely, I believe it was the MG that kept me grounded and would not allow any physical effort to be tested. MG combined with heart surgery, made the recovery very tough - believe me. Whatever it was, I believe that a long service career in the army where giving up and giving in is not an option, helped me.
I think it is worth mentioning that the one thing I had a problem with was accepting that I had been struck with an illness that I could not come to terms with. It must have taken me at least three years to admit that I was not able to do what I wanted to do. I have been blessed with always looking in good health - on the outside, so it is understandable that my family and friends who see me, have no idea about the weak, tired and useless feelings going on inside my body and may sometimes wonder why I am not making more effort.
To anyone who has cause to read my account, I wish you well and hope you are able to cope. We are all, of course, individuals and what you have read will not fit in with you entirely but hopefully it will go some way to helping you when there is someone else experiencing the same problem.