Monday 16 June 2014

All Good Things... Weeks 12-14: May 24th-June 16th

For an explanation of this project and blog please click here.
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All good things come to an end.
I started this blog in March after a sudden, unexplained and totally unexpected major improvement in my illness. It is well known that my illness has flares and remissions. In my case this usually means that I am either "sick" or "very sick".
This time was different. After years of being almost totally housebound I was able to leave my flat for up to an hour at a time without severe repercussions.
I had no idea how long this would last, although sadly it was likely to end at some point. Tomorrow? Next month? Next year? Never? I hardly dared hope. So I didn't think about it. I treated this good patch just like I did my bad patches: one day at a time. I took each day and enjoyed it as much as I could. I hope in doing so that I did this remission justice.

I have now been sick again for 4 weeks straight. I have only been on one "wheelchair walk". Last week I tried to go out as my sister was visiting me. However even very short trips led to me sleeping for several hours and I felt pretty terrible, however much I tried to hide it.

So here I am mostly stuck inside again. I can feel the Common calling to me. Summer is now here and I long to go out and take photos of the green trees. In some ways I feel more claustrophobic than I did before.  But I have no regrets and many happy memories. And who knows? Maybe another remission is just around the corner.

In the mean time life goes on. Being (mostly) housebound is no excuse for not living.
In the past 4 weeks I have organised several board games evenings, had weekly lunches with a friend, seen another friend and her 3 year old for lunch, had church group meetings, 3 weekly film+video sessions with another friend, had my sisters and baby niece over to stay, and celebrated my god daughter's birthday. I've chatted with friends abroad on skype, family on the phone and used social media in one form or another to chat to other disabled people.

I'm gradually sorting through the hundreds of photos taken by various family members during my sister and baby niece's 6 week long visit. I've finished two Future Learn distance learning courses and signed up to another one. I've bought some new fish, and have constructed a completely ridiculous hamster playground (it seemed logical at the time). I'm working my way through several drama series on Netflix. Depending on how well I'm feeling I'm also enjoying audiobooks, kindle books and video games.

So. Sick and fed up of feeling ill? Yes. Confined and wishing I could go out? Yes.
But. Bored? No. Lonely? No. Unhappy? No.

I've thoroughly enjoyed my "wheelchair walks" and I will be delighted if they happen again. But I've adapted to life as a housebound person. And I'm happy. Let no one think otherwise.

My last wheelchair walk with sister and baby niece

End of Project
Click here to go to Week 11
Click here to go to Week 1, Start of Project

Week 11: May 17th-23rd : Return Home

For an explanation of this project and blog please click here.
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Saturday May 17th:

My sister and baby niece were off to London for a hen party (baby friendly). It was my Mum's birthday and we spent the day going for a walk and later enjoying a good meal together.

Sunday May 18th:

It was finally time for me to return home. I found it really hard to say goodbye to my sister and baby niece. This isn't quite a final goodbye as my sister will come and stay with me one more time before they leave. It was still difficult though. My niece has grown to know me over the past two weeks and it is heartbreaking to know that she will soon return to Australia and I won't see her for another 6 months.

The trip home was again extremely painful and tiring. I am glad my parents don't live any further away.

Monday May 19th-Tuesday 20th:

I had plans to do "stuff" but my body had other ideas. I was awake most of the night being very ill and was not up to much. Twitter was my friend and kept me from feeling too miserable or sorry for myself!

Wednesday May 21st:

Felt a lot better today. I ventured outside for the first time since I got back. Unfortunately I only got as far as the postbox and bank at the bottom of the road before I started feeling extremely ill and shaky and had to come home again.
Nonetheless I was able to do several jobs around the house so did feel that the day was productive. And at least my health appears to be going up rather than down.

Thursday May 22nd:

So much for that. Feeling worse again. On the other hand the weather has decided to turn into bad thunderstorms so I couldn't have gone out even if I had wanted to!

Friday May 23rd:

Still not feeling great. However I went and visited my friend and saw my god daughter and her little sis. Or to put it another way I got in a taxi and then flopped on their sofa for the rest of the day while the kids jumped on me or chatted to me nineteen to the dozen! It was very enjoyable but am still hoping things will pick up healthwise.

End of Week 11
Click here to go to End of Project
Click here to go to Week 10

Thursday 22 May 2014

Week 10: May 10th-16th: Family Outings

For an explanation of this project and blog please click here.
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Saturday 10th-Sunday May 11th:

My sister had invited old university friends so she could catch up. The rest of the family had gone to London to catch up with friends of their own who were visiting from France.
As for myself, as indicated at the end of my last post, the various wheelchair walks and playing with my niece had caught up with me with greatly increased pain and various symptoms. So this time was spent recovering.

Monday May 12th:

My sister, Mum and Dad all have birthdays in May. Since my other sister had also managed to join us and I was now feeling better, we decided to do a joint celebration.
We went out for lunch at the local village pub and enjoyed an evening together with cake and champagne (at least for those of us allowed alcohol, which sadly does not include me!).

Tuesday May 14th:

This was an absolutely glorious day. I was still feeling reasonably good and so Mum, my sister, niece and myself went on a wheelchair (and pushchair!) walk along a local canal.
However I first went and visited the grave of a very dear friend of mine who died a couple of months ago. He had been my archery coach from the age of 16 until my illness forced me to give it all up at age 20, but he was much more than that. He was like family to me. Quite apart from being funny, kind, generous as well as simply an interesting person, he was there when I first became ill and supported me through it all. He was a huge part of my life and I will never forget him.

Canal Walk Entrance

Twisty Path

The Road Ahead

Canal Locks

Barging Through

Dog Figurehead

Wednesday May 15th:

Bleurgh. Muscles gave up in disgust. Day was spent sprawled in a heap.

Thursday May 16th:

Marginally better. I went out briefly with my sister and niece to shop for clothes. We managed one shop and then rushed home again!

Friday May 17th

This was a slightly hard day. A friend of mine died in difficult circumstances a couple of weeks ago aged only 30. Her funeral was today. However due to the travel and length of service etc, it was not possible for me to attend. We supported each other in our respective illnesses and I know she would not have wanted me to put my health at risk. As a compromise I therefore went to the local church and spent time there instead. I think it is what she would have wanted.


Local Cemetery

End of Week 10
Click here to go to Week 11
Click here to go to Week 9

Week 9: May 3rd-9th: Exciting Holiday!

For an explanation of this project and blog please click here.
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Saturday May 3rd:

Much excitement! I travelled to my parents where I am going to stay for two weeks. This took 1.5 hours by car. It was painful and tiring, but it did not provoke a flare up of an illness, simply a worsening of my muscle symptoms.

I hardly ever go away as I am too sick. Travel is extremely painful and I take time to recover. A "proper" holiday would be pointless. I would arrive and have to rest for a day or two. I would then go out for at most two hours and then spend another day or two stuck in a hotel room. Not exactly my idea of fun! Thus I have not been on holiday since 2006 bar occasional visits to family.

But anyway, let's move on. The reason for my visit is that my sister is over here for 7 weeks from Australia and I am meeting my 6 month old niece for the very first time. So far we have only communicated by Skype. This has been surprisingly successful, even playing games of peekaboo etc, but not the same as seeing her in person.

Sunday May 4th:

My sister arrived. I can't begin to say how good it was to see her. We are very close and it is hard for both of us for her to live so far away. As for meeting my niece... Well. She is simply gorgeous! (not that I'm biased in any way). Her father is spanish and she has that mediterranean look. Unusually for a 6 month old she also has a full head of black hair. I would love to share photos, but unfortunately don't feel it is safe to do so on an open site.

Monday May 5th-Friday May 9th

My other sister was able to join us and these days were spent simply relaxing together and getting to know the new pint sized addition to the family. She is adorable but really knows her own mind already!

My parents live in a beautiful rural area and some places have had wheelchair accessible paths put in. My health was doing much better and this meant I was able to go on some brilliant "wheelchair walks".

This did take its toll though and some days I was too ill to accompany the rest of the family. I also had several bad episodes of lowered oxygen and my muscles simply gave up the ghost towards the end of the week. We realised this was due to trying to do too much with my niece and adapted accordingly, for instance bringing her to my bed in the mornings instead of sitting her on my lap.

Wheelchair Walks around the Village:

Typical Cottage

Thatched Cottage

Old Vicarage

Fields on way to Church

Church Approach

Local Church

Wheelchair Walk to a Local Viewpoint:

Route to Monument


The Monument

We got there!

End of Week 9
Click here to go to Week 10
Click here to go to Week 8

Week 8: April 26th-May 2nd: Fish Tank Therapy

For an explanation of this project and blog please click here.
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Well things certainly did not improve after Friday night.
Over the weekend I became so ill that I could barely stand. This was a problem as I receive less care at weekends.
A very good friend of mine comes round several times a week to spend time chatting, playing games and watching a film or episodes of whatever TV drama series we're into at the moment. He was due to come round in the evenings.
When I realised that even going to the kitchen to fetch supper that my carer/PA (personal assistant) had prepared for me was next to impossible, I phoned him to see if he could come round early and give me a hand. Luckily he was happy to do so and in fact we spent quite a fun weekend together despite the fact that I felt like death warmed up.

The rest of the week was spent recovering. I was too ill to do much at all. I fell asleep if I watched TV.  I couldn't read. I couldn't listen to audiobooks. I couldn't spend any time on my laptop. So mostly I watched my fish tanks!

I have 3 of these in my lounge: 2 larger and 1 small one.
Being a geek, I have decorated one on a Doctor Who theme. The others are currently decorated on a greek and oriental theme respectively.

These are great for the days when I am this ill. They are simultaneously soothing and interesting to watch. It is certainly a lot better than staring at the ceiling! This is what I call my "fish tank therapy".

Doctor Who Fish Tank

Greek Fish Tank

Oriental Fish Tank

End of Week 8
Click here to go to Week 9.
Click here to go to Week 7.

Tuesday 29 April 2014

Week 7: April 19th-25th, Easter Visit

For an explanation of this project and blog please click here.
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Saturday April 24th-Monday April 26th: Easter Visit

My parents arrived for the Easter Weekend. We are a very close family so it was really great to see them.
My sister also came for Easter Sunday. This is unusual as she lives a hectic lifestyle as a freelance classical musician and is usually touring the country.
The great news is that I was well enough to go out for lunch again with the family. Things really are going well at the moment. That is now two trips out in little over a week.
I have to admit that Easter Monday however was spent recovering in a little heap!

Tuesday April 22nd- Wednesday April 23rd

The weather had turned cold and I was still extremely tired from the weekend, so had to stay indoors. I spent my time catching up on my online astronomy course, although I was less then impressed with the subject material of Moon rocks. I didn't like geology at school and it turns out I still don't like it now!

Thursday April 24th

The weather had turned sunny again today and I was feeling much better, so I made the most of it and went for a long walk. It is striking how much the trees and flowers are changing now. Everywhere is bright green and it is very different to just a month ago.

Green Lane

Intermediate Green Avenue (Compare to March 12th, Week 1)

Friday April 25th

Today was a hospital appointment with my gastroenterologist. Typically it tipped it down so we got drenched getting the wheelchair in and out the car both here and at the hospital!
I had been ill during the night with, as it happens, gastric symptoms, so was not feeling at my best. Still, the appointment didn't take long and I was able to get back home quite quickly. The appointment was routine. Basically keep doing what we're doing and keep an eye on things.

However I deteriorated a lot during the day. I dragged myself to bed before 8pm. I was awake most of the night with nausea, headache, joint pain, dizziness, episodes of full blown vertigo, twitching, jerking, severe cramps and gastric symptoms.

Thursday 17 April 2014

Week 6: April 12th-18th, A Day to Remember

For an explanation of this project and blog please click here.
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Saturday April 12th: A Day to Remember

Today was a brilliant day.
I went out for lunch to the pub with a friend. This, for me, is a very rare and special occasion. I am seldom well enough to do so. The last time I went out to the pub was during the Christmas holidays in December, almost 4 months ago!

The pub is nice. It is fully accessible (including a disabled loo, which, as disabled readers will know, is a rarity). The food was expensive but good. I had steak and treated myself to a hot chocolate brownie for dessert. (Well, if I'm going to finally manage to eat out, I may as well make the most of it while I'm there!)

We then came home and I collapsed in a heap on the daybed. After I'd recovered somewhat we watched the second hobbit film which I had been waiting for months to see (even ignoring my epilepsy, I can't sit up through a whole film at the cinema).

All in all, a wonderful day to remember.

To the pub!

I can't believe I'm here!

Sunday April 13th

As expected I was too stiff and sore to move today after sitting up at the pub to eat. Despite the beautiful weather the day had to be spent indoors, hiding under the duvet with the heated blanket on, trying to get the pain to subside a little.
Still, all was not lost. I enjoyed watching some episodes of Castle, playing games, and starting a cross stitch for my little niece in Australia. I intend to finish it for Christmas. It was a good day.

Monday April 14th

Sitting up was still painful today but I was able to force myself to leave the house. The weather is absolutely gorgeous at the moment. Mind you, I still feel the cold. I feel very much the odd person out as I am still wearing my winter coat and gloves whereas all around me people are enjoying the sun in T-shirts. Of course it is very different when you are sitting in an electric wheelchair without moving as opposed to walking, not to mention a degree of windchill! My concession today was to remove my hat.

My photo today is of the Tree Trio I took a few weeks ago. Much to my surprise I came across a funfair setting up around it! There must be something planned for Easter weekend.

Funfair around the Tree Trio

Tuesday April 15th

I was struggling quite a bit today with quite high pain levels. I also discovered that I'd forgotten to recharge my wheelchair! This isn't too much of a problem. Roadrunner (outdoor wheelchair) should be capable of doing 24 miles (albeit on a smooth flat surface). So even if I forget to recharge him a couple of times, I should still be able to take him out a few days running, since the longest walk I do is 4 miles long.
Still, I decided I would only go on a short walk today and even then, had to really drag myself out kicking and screaming. I'm trying to convince myself it was a good idea, but given I'm still cold over an hour after getting back and snuggling under a duvet, part of me is still sulking!

At least it was a beautiful day. Most trees are now in blossom. This one is near a church I go past.

P.S. I have a habit of naming inanimate objects. This has included my bow when I still did archery, and my clarinet and my saxophone when I was still able to do music.

Church Cherry Tree in Blossom

Wednesday April 16th

Very sore, sick and shaky today so had to stay indoors. As I've mentioned before this doesn't mean it was a boring or bad day, but I am disappointed to miss the good weather.

Thursday April 17th

URGH. And possibly yuck. Nearly collapsed while standing in the kitchen. Although I have an indoor electric wheelchair I try to walk as much as I can. So some of the time I use the wheelchair and some of the time I walk. Whether I use the chair varies considerably throughout the day and also on how far I am going (eg across a room or all the way down the hallway). Today I obviously misjudged how well I was feeling!

It goes without saying that I was confined to the house today. Anyway to cheer me up here is a great pic of the tree outside my window which has finally blossomed. It blossoms once a year for two weeks and looks magnificent. The rest of the time it is boring! This was taken yesterday as the evening sun was shining on it.

Evening sun on red blossom

Friday April 18th

I'm writing this on Thursday.  I have family coming at the weekend for Easter. This means I will need to rest in preparation, particularly as I haven't felt all that well the past couple of days. Unfortunately this also means no wheelchair walk. On the positive side I'm hoping the rest will allow me to recover enough to have a good weekend.

End of Week 6
Click here to go to Week 7.
Click here to go to Week 5.