NOT WELL AT ALL FRIENDS, PART 3

Well it has been a long, exhausting, very painful, depressing and frustrating few weeks for me but there it is, that faint glimmer of light at the end of that long, long tunnel.

After over two weeks I'm almost pain free, energy resumed and a bit of wanting to live again. Wanting to vere outside to see what's happened since I last popped my head over the parapet. All thanks of course due to copious amounts of drugs......I just love my drugs. I've had just 1 flare that was worse but never one that lasted as long. It's all been about finding just the right dosage for right now......story of our liv s isn't it?

I'm back on the dreaded Prednisolone but on only 5mg.....for now. Even smaller doses, such as 7.5mg have me swinging from the ceiling lights! They do kill the pain but I would need to be tethered to bolts cemented to the ground.....I'm not joking! Of course these too soon loose their potency and have to be increased. I'm still on Gabapentin too but reduced to 300mg X 3 per day. I'm also on paracetamol 1,000 X 3 per day. So far this seems to be doing what was needed, early days though and I know it.

Im off on my cruise on Thursday and at last I'm beginning to actually look forward to it....might even get some packing done. If the drug regime I'm on at present last until the end of September I'll be very grateful as on the 26 I start my 'gold' injections. I have a terrible history with regards to DMARDS and Bio's.......'gold' is my last option. If it doesn't work I'd say I'll be back on Prednisolone for the foreseeable future.

But that's all in the future. The lethargy is gone, as is the pain and I'm taking the spare pillow off the sofa today to put it back on the bed where it belongs and the Dyson will be out to get all the dog hairs that have gathered in balls in every corner of this bungalow. The line is full of cloths drying in the late summer sunshine, my border beds (all done when I was in my spring bout of steroid induced mania) are in their last glorious flush of colour and all is looking well in my world again, thank goodness......it has been a long painful slog but I've survived, again. All done with more than a little help from my friends here, thank you soooooo very much. XX

PS I'll let you know how I managed on my cruise when I get home. XX

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  • Like you I love my drugs....until they go rogue on me......then I love the next one!

    Thank goodness there are so many to choose from....even if it seems to take so long to get the right one!

    Bon Voyage......say hello to the sun for all of us sitting here watching the rain tip down!

  • Thanks Crone for the good wishes.......I intend to enjoy every minute. I haven't had a holiday since I was diagnosed 5/6 years ago. I did have a lovely city break to Edinburgh for the their C'mas market two years ago and it was wonderful......I love Edinburgh, I just like v Scotland full stop.

    Anyhow sitting in a hot tub, glass of something in hand, sailing the Med and hopefully not a care in the world.......yes I'm going to savour every minute. X

  • You are a wee hero 😀 Make sure you rest now before thursday so you have the energy to enjoy the cruise!!! Have a wonderful time xxx

  • Thanks so much. Resting I'll be doing the nu! X

  • Hi lovely Jeanabelle

    I hope you are able to enjoy your cruise and have a good break. Where are you cruising?

    RA is a horrible disease and not always easy to treat, as you have found out. However, you're tough as nails and I know you will get through all the ups and downs. You're stronger than many I know.

    I'm pleased to hear you're having a better day but please don't overdo it. Pace yourself and take it easy, yes?

    Take care xx

  • Hello Doll, we are doing Barcalona, three cities in Italy, three of the Greek islands, Nice, Turkey and then Athens. We are staying an extra day in Athens and an extra two days in Barcalona. We are going to do the tour of Pompeii and we were to do the tour to Ephesus too but that has been cancelled due to the political situation in Turkey. I'm really disappointed about that but it is understandable and really for our own good, I'm a bit of a history buff and love antiquities.

    Today I did a few things about the house and took the dogs for a short walk but that is me now for the day. Feet up and watch a film.

    Thank you for your words of encouragement, they do make a difference to me Doll. XXX

  • If you have time in Barcelona do try the Hop On Hop Off bus (actually you can scramble on/off!) but make sure you are in the right queue where you first hop. We wasted time standing in the wrong place. It's very good value &'you can just stay on all the times& sightsee if you want.

    Bon Voyage again!

  • Crone, these are really great for seeing around a place you haven't been in before, it's great to know they are in Barcalona. I first used these in Dublin and I know around there fairly well. Also the people who talk you through the various places of interest can be very, very amusing too. Thanks for that info, we will be using it for sure. X

  • It has helped me, reading about your recent improvement. I need to remember that these flares do pass. I'm in a bad place, pain-wise, and am almost resigned to staying on 5-7.5mg Prednisilone for life, as well as Rituximab and Methotrexate. And, I'm setting off to France next Friday, with the intention of painting. My joints are painful, the fatigue is overwhelming; I should probably have opted for a cruise!

    I hope you have a great time and can make the most of your holiday. Jora

  • Jora, hopefully when you get to France, feel the sun on your aching joints, breath in fresh air and enjoy being in a place you love it will all help with your over all well being.

    I have had full body flares three times now. The first two times the steroid injections I got in the hospital helped almost right away. This time it was very different. It is now well over two weeks and I'm still in some pain but it is pain I'm used to and can cope with. The fatigue is what has persisted this time. I'm 6 years older now so I have to take that into account. It takes me so much longer to build up the energy to get going with my day but I do get there in the end.

    A long holiday in the sun and some lovely Manuel bringing drinks to me is just what the wonderful Bronagh, my Rheumy nurse, ordered.

    As for the dreaded Prednisolone, well it is all that I can tolerate and that is just the way it is......for now! I'm hoping that the gold injections (I really must look up the medicinal name for it) will do something for me at the end of September. It takes them forever to work so maybe by Christmas/New Year I'll be running on all cylinders.......look there I go protecting, lets get our summer holidays over first.

    Jora, nice long deep breaths, keep a posie of fresh lavender with you, see what is in front of you and just paint......you'll soon forget about your pain. Have a great and inspiring time. J XX

  • Thank you J. I feel your empathy.

    I hope you are right, though right now, I can't even use a conventional keyboard, let alone hold a paint brush! And the fatigue is something else, but I don't need to tell you about that. I plan to paint with rags, and I must remember to get Chris to open the tubes before he disappears over the horizon!

    I hope my next post will include a painting!

    Jo x

  • Nora I really do feel your pain, I do. We have to do what ever makes things easiest for us.

    You made me smile when you mentioned getting tubes opened for you beforehand. I go around the house looking for that Mrs in advance when I know one of my grandsons will be over to see me.....nessisity being the mother of invention! Take care darlin, J. XX

  • I am so glad it has passed again. I am new to all this and learning that flares come and go. It sounds like a kind of pain endurance marathon. Can I ask, does all the pain go after a flare? My feet seem to be always a bit sore in the morning but get better as I use them. I'm still waiting diagnosis but I think I've been through a flare or two.

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