The beginning

[Daviator]

Hi everyone,

This will be my first post on this forum.

After many years suffering chronic pain and living with it, I reached my limits.

For the last 10 years I have been a flying instructor, which was the most fun I have ever had at work. The intensity of my working day provided enough of a distraction to keep me going, until the distraction of the pain took over. When I stopped, which was an extraordinarily hard decision, I collapsed. Months passed, some days I could move others not. By the middle of the summer I was able to move around but had no stamina. My hands felt like claws and I had constant pain. It took months before I could see a rheumatologist, during that time  I looked OK, which caused me unexpected problems. Those around be could not see my pain, it occurred to me that we lack vocabulary for describing pain.

Steroids helped, MTX helped, not to get rid of the pain exactly but rather to change it into something less acute. My skin was cold all the time and it felt as though icy ants were crawling all over me. Plus the daily surprise, what will I be able to do today.

It became clear that the medication was not going to return me to any semblance of normality, added to the fact that taking MTX ended my flight privileges, I was going to loose my job. 10 years of great fun flying and teaching and learning, also the job came with a flat to live in and after 10 years it was my home. All gone.

Social housing could not offer me more than BnB, sorry but no. I was told that RA was not regarded as a special case.

With a little money left in my savings account, after nearly a year of nothing but minimum statute sick pay. I was desperate. Private sector renting proved far too expensive. By chance I found a boat for sale on a quiet marina, a deal was struck and now I live on a boat. One step from homelessness.

The boat, has its own difficulty but it is my space and I needed that, it also provides me with something to do when I can. We both ( the boat and I) need healing, this felt right to me when I considered it in the first place and still does.

All the external noise had to stop before I could begin to grieve the loss of my life.

The boat is my cocoon or perhaps my chrysalis.

How am I? The boat and I are still floating.

Thanks for listening.

Dave

[cazzyme]

Wishing you the best. Glad that you have found your personal haven, to retreat and repair.

[Ali_H]

Hi Dave,

I'm sorry to hear the toll this Ruddy Aweful disease has taken on your life...its shit and there is no way of dressing that up any nicer, sorry.

The up side is once over the initial shock it's possible to find new, previously unconsidered, paths through life. I've discovered a liking for sketching and gardening - the later I did begrudgingly before because it needed doing but sketching was nowhere near my horizons before. I still work full time but wonder for how much longer...hopeful for another year or so to get the mortgage down a bit. Then possibly down to a 4 or 3 day week - I teach so if my employer isn't up for me to doing a part time contract I can always switch to supply work (phew!).

I'm not sure what ex pilots do - other than battle on one way or the other through this roller coaster of a condition. 

Your boat sound an interesting prospect and a way of still keeping control over you living conditions etc. Is it a narrow boat... I live in the East Midlands and occasionally walk the local canals- Foxton locks is a favourite place to visit.

I hope you and the boat are good for each other!!!

All the best

Ali

[Daviator in reply to Ali_H]

Thanks Ali

you gave me a little lift, just what I needed.

[oldtimer]

I am full of admiration for the way in which you have taken control of an enormously difficult situation and made the best of it. But it must be very difficult living on a boat with the cramped conditions, difficulty moving around, etc - and the constant dampness. Are you on a permanent mooring and do you have to move for a number of weeks each year? 

Keep asking for help from others, if you don't ask you don't get anything.

[Daviator in reply to oldtimer]

Thank you for you kindness, Actually the boat is quite spacious, and fitted with hand holds and plenty of things to hold on to, easy. She also gives me a gentle rocking motion, which most bedsits can't usually match. There are and will be difficulties, and so it comes down to choices. Do I want to be utterly controlled by the disease or not. Do I want to accept my new "Disabled" status or not.

Same as ever, Not.

I'll have what I can grasp of myself for as long as the choices remain.

Thank you also for reminding me that help and understanding is always near.

Dave

[helixhelix]

Yes, do keep asking for help.  Especially of your rheumatologist, as there may be more they can do to get you more mobile, more pain free and less weighed down by this disease.   I do think there is often an inbuilt reaction when asked at each appointment how we are to say "I'm fine", or " not too bad" when the reality is that maybe we're a bit more controlled but life is still very tough.   I got round that by constantly asking whether this was as good as it gets, and basically trying to prompt the rheumy to work harder on solutions for me rather than just sticking to standard dose of MTX which had brought the numbers back into line but hadn't actually helped with getting me back in control of my life.  

As a pilot you are presumably very focused, very determined and probably hugely analytical.  All useful things in tackling this disease, so hopefully life will start to improve for you now you have a stable base to work from (even if it rocks to & fro)

I've recently re-read The Little Prince by Antoine de St Exupery, very interesting to read the aviator's words as an adult not a child.  If you've never tried it do give it a go. 

[Pedz]

Hey Dave fabulous story even if terribly sad, I  am struggling to hang on to the only job I really know I have worked offshore ( oil rigs) for almost 28 years since being diagnosed with RA it seems offshore and progressive degenerative disease don't make good bed fellows, feel like I'm losing my grip on the only lifestyle I know so kind of relate to what your saying....thanks for listening...

Be happy fella. 

[Daviator in reply to Pedz]

I worked offshore for a couple of years .I know it can be harsh and lonely. I left after a week as a hostage in Nigerian waters.

RA offers many new challenges

Good luck

[Pedz in reply to Daviator]

That would do it for me also, I'm at the stage I wish someone would make a decision one way or the other, don't like the limbo situation

[minka]

what an absolute bummer dave you must be one hell of a brave man and they dont even understand your situation we need to get out the eu and spend some of this 55 million a day we pay for being in on ourselves.

all the best dave john

[Daviator in reply to minka]

We are all brave

Even if we don't smile all the time.

[Hidden]

Sending you lots of empathy. I am so glad you have the boat. I am fighting my arthritis with diet and physio although the hospital want me on methotrexate. When I feel low I bring to mind a quote which has been attributed to Stephen Hawkins "You can always do something." Take care of yourself.

[Em13]

Your story touched me, Dave, with its contrast between what was and what is, and the suffering you have been through. I'm sure many of us are struggling to adjust to a life other than what we expected or hoped for. But the changes, although hard, are less extreme.

Curious how you have transitioned from one element to another. Swapping the boundless freedom of the skies for the moving, soothing quality of water. Not earthbound like the rest of us.

I hope you find support through all this, and medical intervention that relieves your pain and enables you to fully engage with life again. They would have us believe that if one medication doesn't work that there are always others to try.