A lot of catching up to do!

Where have the months gone? What have I been up to? What have the few readers of this blog been up to? I’m sure I don’t have many or even any! Let’s face it, my blog is not all that interesting but I’m a bit of a geek so I plod on – or not so much this winter – now ‘summer’….

I think the last thing I was attempting was the Belfast City Half Marathon. I was doing it for MPD Voice (now MPN Voice). ET has been reclassified as a Neoplasm but I’m still only taking aspirin. Long may that last! I did the Half Marathon and I didn’t come last, I came third from last… I was in agony the whole time and struggling with severe breathlessness, racing heart and excruciating leg cramps. Fast forward a couple of weeks and I get a letter saying I need my iron levels checked and I learn that they are in my boots. Bring on the iron tablets, sick leave, hospital procedures and appointments while someone tries to figure out how I ended up with an iron level of 3.5! Eek!

I’m glad to say that little episode is behind me and I am gratefully pressing on. I am training again. I am slow, I have put on weight but I don’t mind. I can now stay awake past 9:00, I can undertake more than one activity in the day and I am slowly getting there. I am back at the gym and I will be doing the British 10K in July. This time I will be raising funds for Lupus UK. After being ill and diagnosed with an overlap of Scleroderma and Lupus, it was important for me to set myself a challenge like this.

I really appreciate having some of my strength and energy back and love the fresh air and exhilaration of plodding along beside the sea – even when a squall blows up and whips the salty air up around your face and bites into your skin. Some of these days I might get a warm, dry run… Who knows? I’m looking forward to crossing the finishing line on the 12th July knowing that my illnesses have not defeated me (yet!) and hopefully raising a healthy donation to Lupus UK.

Sometimes life just happens…

It’s been a while since I posted here or, more importantly did any training. With the 14th September approaching at a faster pace than I can run, I really need to get focused on my goal. Yes, me concentrating on something for more than 5 minutes could be a challenge but it will be a lesson in perseverance and dedication, ‘character building’ might be the correct descriptor!

So far this summer, I have been training, reading, getting used to new medication, experimenting with alternative type treatments, spending time with family and friends, celebrating one more successful circumnavigation of that big yellow thing burning my skin but making the grass and flowers grow and generally relaxing. Looking back on how I was about a month ago, I am glad to say my energy levels are finally picking up and I think all the running, Zumba, Pilates and conditioning work are doing me good.

I have had a slight hiatus though. Last week a very close family member took suddenly ill and was admitted into hospital. You can imagine our concern, as the close relative described a pain in his chest and back and then started rubbing his left arm. We didn’t hang around. Mercifully it was ‘only’ gallstones. This means monitoring the situation, him keeping to a low fat diet and possibly surgery in the future. Thankfully the person concerned has decided to keep on with their plans instead of sitting around waiting for something bad to happen! Now things are settling down a bit, I can get back into my routine again (not that that was top of my list of priorities!).

So, I finally got out for a slow 5K last night. I was beating myself up for being so slow, when I remembered the considerable heat we are having at the minute. Hats off to people who run in really hot countries. It must be a treat to visit this part of the world by comparison! I rewarded myself with a glass of cucumber and lemon water – very delicious and very refreshing!

This morning I decided to get out earlier in the day. This helped me a little but I was still tired from last night. No worries though because the worst run was the run that never happened! I found the scenery inspiring and loved the feeling of heat on my limbs, after spending the whole of the Winter totally freezing. I don’t want to spoil the enjoyment of the moment by stressing out about the Winter, but I think I am going to have to take a lot of my training indoors this year. Shame because I feel really cooped up if I don’t get out for some part of the day now.

I’d just like to share some images now from this morning’s outing. On days like this, you wouldn’t want to be anywhere else!

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Flossy continues her training

So far this week I have been fortunate enough to have the time to go to the gym and put into my training. I am doing my best to stick to the programme my lovely personal trainer gave me and have been going to some of the classes on offer at the gym. Some of the things that have been frustrating my efforts at the gym have been lack of equipment or broken equipment but I won’t let that stop me!

This week, I have indulged in Pilates and Zumba as well as my weights programme and runs. The Pilates class was amazing. It brought it home to me how tight I have become in certain parts of my body. While I could not do everything the rest of the class was doing, I took the opportunity to have a good stretch where I needed it. I’ve booked into another Pilates class this week.

I don’t need to say much about the Zumba. I defy anyone to not to smile during a Zumba class. I find I forget how hard I am working as I get into the music and am challenged by the new routines. I am no dancer and left and right are often foreign concepts to me but I’m not alone in that! It just adds to the entertainment value.

Tonight I headed out to do intervals. I started with a 10 minute warm up walk followed by 10 sets of intervals of 5 minutes high intensity followed by 2:30 minutes walking recovery and then a 10 minute cool down walk. I was surprised at how much I enjoyed this and also suspect that my pace wasn’t much slower that when I am just out for a normal run.

Having a good soundtrack helps the efforts. Again I was inspired by Beethoven and that old chestnut, the 9th Symphony. I broke into a bit of a sprint (my standards!) at the end. I felt pretty jubilant and energised because of the music, the exercise and the weather. I just need to add another couple of tracks to my compact and bijoux playlist as it was just a few tracks too short to see me to the end of my run.

Right now I am feeling accomplished and am rewarding my efforts with fresh strawberries and Greek style yoghurt, very tasty! This week, apart from the exercise, I have been trying to concentrate on increasing the amount of fruit I eat. Filling in My Fitness Pal has made me painfully and shamefully aware that I do not eat enough fruit and veg. As the adage goes, ‘You cannot out train a bad diet!’

So that’s tricks for now. If you want to sponsor me, you can visit my Just Giving Page here:

JustGiving - Sponsor me now!

I’m running the second Belfast City Half Marathon on 14th September for MPD Voice. You can read more about the charity here:
http://www.mpdvoice.org.uk

In an ideal world…and what the gym lacks…

I was sitting feeling a bit sorry for myself yesterday evening. ‘In an ideal world, I would have done my run and feel refreshed and energised by it but I feel too rough today to do anything.’ I had a bit of a conflict going on between knowing I have to train to do a half marathon but feeling a little knocked about by the side effects of Plaquenil (mild) and using that as nothing but an excuse to do nothing.

A combination of realising I have made my intentions public to run a half marathon, have committed myself to raising money for MPD Voice, the sponsorship I have already raised and the thought that sitting around was not going to make me feel any better motivated me out of the very comfy armchair to get moving. ( sponsor me here! JustGiving - Sponsor me now!)
That and the thought that I have paid for a programme to help me with my training!

I am so glad I did go. What a perfect evening for a jog beside the sea which was like a mill pond! It was raining gently but still quite mild. I didn’t need sleeves or gloves. I decided I would set myself a target of one hour but ended up staying out a bit longer. After feeling so groggy all day I was surprised at what I was able to do. I know I was very slow and I had to walk a little but it was a much more enjoyable evening that the one I had planned for myself!

As I ran along the beach I was accompanied by Beethoven’s 9th. Ok, I know it sounds a little contrived and pretentious but it was the perfect accompaniment. It’s a pity it’s not as lovely or invigorating to sing as it is to listen to! I really did feel uplifted by the whole experience. To answer the title of this little entry, here are some pictures of what you do not get at the gym!

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Holy, Plaquenil induced trippy dreams, Batman!

One week is not a long time to be taking this drug of choice prescribed by my rheumatologist for whatever Lupus symptoms I am meant to be having. I have been told by many people to give it a few months and I’ll really notice a difference. From what, I am not too sure…

So one week in, I’ve now got the gurgly stomach and rowdy gut that I was told I might experience. This seems to be pretty common but what’s with these completely spaced out dreams? Like, hiding from Hitler behind a shower curtain and another one with lots of white BMWs driving down the wrong side of the dual carriage way near me. These are only some of the sketchy details I can remember.

I’m feeling pretty groggy now but I’m still going to force myself to do some sort of exercise tonight. It might help me shake off that tired, leaden feeling, as well as shifting the barrel that is accumulating around my midriff! I have a holiday in the sun next month and a bikini I would very much like to wear! Don’t want to be taken for a beached whale!

Waxy skin

I didn’t think I had this until the rheumatologist I saw in April pointed it out to me on my hands. It was one of those things I had convinced myself I didn’t have and therefore could not have Scleroderma (or the CREST form my blood tests showed up so positively). I now recognise this and find it odd that it shows up more in the evening than during the rest of the day.

I’ve now found some of this same skin on my face. Around my lips and chin. You can’t really see it unless I pull a stupid face which I did last night while cleaning my teeth. I really don’t want to end up with a small restricted mouth. There it was. All white and waxy looking. Around my top lip and on my chin.

It’s not the worst thing that can happen, I suppose. My friends are all fretting about wrinkles and bags under their eyes. The little tubs of face cream you can buy that claim to either contain collagen or boost your body’s production of collagen make me laugh, the beauty industry’s cruel little joke, the irony of which not very many people get. I wish we could embrace aging both gracefully and healthily. I also wish people had more respect for the more experienced people who have lived a little!

Still I will do my best not to sit and dwell on this new discovery. There is too much work to do. Too many normal, mundane chores and tasks to fulfil. I take comfort in that. I also take comfort and feel empowered that I have just been to the gym and had a Personal Training session. I had Bambi legs after and a little bit of a Bridget Jones moment.

I don’t feel ill. I am learning a lesson in taking one day at a time, not stressing the small things and making the most of everything. It is a glorious day here. Once I have done all the housework I need to do, I plan to make the most of it. A walk along the beach or maybe a book in the back garden, I’m still not decided but this day is too glorious to waste.

The irony of it and some very good news

I have MCTD (Mixed Connective Tissue Disease). Basically my body thinks of itself as one big virus and makes various autoantibodies to fight off the bits of me that I would rather stayed intact and functional. That said, I’m relieved that I really am quite healthy despite this and my biggest issues are fatigue, Raynaud’s and reflux all of which I manage through medication and lifestyle changes.

All winter I have suffered the ill effects of our cold, damp climate. I have persevered with my running because I believe exercise gives me a real boost both physically and emotionally. Sometimes though, all my layers have not been enough to protect the outer extremities from Raynaud’s and at one point I was starting to wonder if I would ever feel warm again!

I’m relieved to say, yes, I have started to experience that odd sensation commonly referred to as heat quite recently. I have been removing sleeves, gloves, hats, scarves etc on my runs. I have even had my toes out and am thrilled that they stay relatively pink when exposed to the elements. Of course, I do get caught out every so often, such as the time I skipped down the refrigerated aisles in the supermarket whilst clad in a lovely summer dress and flip flops… Doh! That became quite a painful shopping trip and a learning experience for me…

So, where is the irony? The irony is that part of my diagnosis is that, as well as the Limited Scleroderma, I also have a ‘touch’ of lupus. Guess what sets the Lupus off! Yip, UV light! I’m not sure how severe a reaction I will have. I just know that last year I ended up with quite severe mouth ulcers, a mild rash on my face which sent me to the beauty counter for some expensive makeup to coverup with and migraines. Of course this was all pre-diagnosis and no one has ever confirmed if the two were connected.

I intend, however, to fully enjoy the summer weather and cover up as necessary. I have my sun hat and sunscreen at the ready and a whole summer to prepare myself for the Belfast city Half Marathon in September. I am making progress though I was totally floored this weekend and slept a lot of it! On one hand I’m mad at myself for sleeping so much, on the other I’m hoping the rest will have done me good and I’ll see the benefits when I hit the gym tomorrow!

The piece of very good news is that my CA125 levels are normal and I have been discharged from the gynae clinic! Hurrah! One less department to grace with my presence! I’m very grateful for the care and follow up I received from this department and grateful that it was all covered by the NHS!