Smiling Clare

Living Life Within the Limits of Chronic Illness

Author: Clare Wood Page 2 of 45

2018 A Review & 2019 Plans

So it’s been a busy year in 2018, more to do with health stuff than anything else and so my list of goals got somewhat forgotten!

  • Meet some of the fantastic friends I’ve made online through university and M.E. groups. Unfortunately I have yet to manage to arrange this, but it will roll on to 2019 in the hope I will finally be able to arrange meeting up with some of my amazing friends.
  • Finish decorating my room. This one still isn’t quite done but I have made significant progress on this front; the heating is now sorted, another wall painted and shelves painted. There is just a wardrobe left to paint, a little bit of wall where the radiator used to be to paint and a bookcase to find, purchase & build! (Thank goodness I have a lot of help in doing all this!!)
  • Attend the church carol service. Unfortunately due to my health and the plans for Christmas I was unable to attend the church carol service, but there’s always next year.
  • Try and find a suitable job I can do from home and manage with my health. This well and truly failed miserably, in fact I have been forced to admit that right now I am unable to work and started claiming benefits (a nightmare in itself), hopefully my health will improve and I will be able to find something manageable in the future but right now doing anything for more than 20 minutes at a time is ridiculously difficult.

So having gone through all the plans I had which I didn’t manage to do, it’s time for a more positive look at 2018, the highlight of which has got to be being a bridesmaid at my best friend’s wedding! They did so much to accomodate me being able to be there, and although I missed out on seeing their first dance, I did manage the majority of the day. It was well worth the week or so of severe payback which followed!

The other good thing that stands out for 2018 is all the things which have gone on healthwise; referrals to the CFS Clinic (although the experience hasn’t always been positive, see here for more, the Occupational Therapist seems to be understanding and helpful thus far), wheelchair services where I was provided with a wheelchair more suited to my size, and finally a specialist cardiologist in London to investigate the dizzy/fainting spells I get, the current theory being Postural Orthostatic Tachycardia Syndrome but that appointment isn’t until May 2019 so we’ve got to wait and see what the specialist says.

Now for 2019…

Obviously the some of the goals for 2018 have got to be carried over as I still want to do them:

 

  • Meet some of the fantastic friends I’ve made online through university and M.E. groups.
  • Finish decorating my room.
  • Attend the church carol service.

But really and truly I need to add a few more which might be easier to achieve too, so…

  • Learn to crochet something other than granny squares
  • Learn Python programming
  • Blog a bit more than I did in 2018, including book reviews and all sorts.

I’m still struggling to think up goals which will be achievable and make the end of the year feel somewhat better than this one does – it would have been nice to be able to cross off at least one of the goals that was on my original list, but here’s to making 2019 a better year than the last.

2018 certainly had it’s challenges but we have muddled through and there have been some wonderful highlights during it too.

I hope you all had a wonderful Christmas and New Year, here’s hoping 2019 brings great things to us all.

 

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Happy Christmas!

It’s hard to believe it’s that time of year again, the time for family, friends, food and gifts. To celebrate together and be merry.

I know this can be a tough time for a lot of people with chronic illness, and those with little or no family. For any of you reading this and finding things tough at the moment please know I am thinking of you.

For me Christmas is a lovely time of year, spent with family and friends still. However it is rather challenging and no doubt I will overdo things and have a number of bad days following the festivities. But I hope it will be worth it, even if it is just seeing some smiles on my family’s faces and making sure none of my family are left alone this Christmas; as a family we always have tried to make sure none of our family, or friends, spend Christmas on their own and that tradition continues.

I find it a little more difficult since getting ill but it really is worth it. Christmas is all about spreading joy and kindness, and that’s what we try to do.

Anyway I am wishing you all the Very Merriest of Christmasses, I hope you are able to enjoy at least a moment or two of the day and that there is something, no matter how small, to smile about.

Clare x

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Getting Organised

Wow, it’s been a busy few weeks but I think I am finally getting organised for Christmas and may even have recovered from a virus too (I still have a lingering cough and the fatigue is a bit worse than usual though…).

I (stupidly?) thought I’d make a few of the Christmas gifts this year and so I have been busy knitting and crafting getting them ready for wrapping. Thankfully I have now almost finished the final one and so I’m hoping I will be able to pace myself with the wrapping and other preparations for Christmas.

I managed a trip into the city centre to do a bit of shopping and support the local shops before December, in order to avoid the crowds. I think the fact it was a damp and windy day helped as well though! And now there are only a couple more gifts to get, which is scary as I’m not usually this organised.

But the general idea is to try and pace myself a bit better, so there is less rushing around and pushing myself beyond my limits. It also means I don’t have to worry too much if I catch a bug like I did the other week as I can take a few days to rest without it meaning I’ll run out of time to finish the Christmas shopping and what not! Although I am guilty of making myself a schedule to try and stick to in order to stay organised, and putting myself under a bit of pressure to stick to it. That’s a habit I can’t seem to break!

How are your Christmas preparations going?

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Chelmsford to London by Train, in a wheelchair

August 29th 2018 is a day that will long be in my memory as frustrating, disappointing and at times a huge struggle. That is the date I had to travel to London for a hospital appointment, which I found out on arrival, had been cancelled.

Having exchanged some tweets with Greater Anglia and Transport for London, asking for advice on what would be the most accessible route from Chelmsford Station to Denmark Hill, the closest station to the hospital, we were advised to also book assistance for getting on and off the trains. And so that is what we did.

Assistance all booked, and details printed and in hand we set off at 9:30am for the station. Arriving 15 minutes before we needed to; according to the instructions we’d received we needed to be there 20 minutes before our train was due to depart. Well we were there 35 minutes beforehand, at 09:55.

This wasn’t a problem, in fact it didn’t matter in the slightest as when we found where we were to get our assistance from they were happy enough to help us onto the train which was due in sooner than the one we’d booked for. We got on no problem thanks to the ramp and there was ample room allocated in the wheelchair spaces for the train. The staff who helped us on said they would ring Stratford, where we would need to change trains, so they knew we’d be arriving and be ready with the ramp to help us off.

On arrival at Stratford things didn’t exactly go to plan. The train stopped and we got ready to get off, waiting for the assistance we’d booked and been told had been organised. But it didn’t appear to be forthcoming. Not knowing when the train was likely to be departing my Dad made the decision to bump me down the, rather large, step onto the platform. A member of the public offered to help and did what she could too. On getting on to the platform we found our assistance at another carriage further down the train – they’d been looking for us! We were told the staff at Chelmsford station hadn’t told them which carriage we were in, and so they’d been looking in all the allocated wheelchair spaces, working their way down the train towards where we were.

They gave us directions towards the Jubilee line and told us to ask inside about assistance, as at that point we were changing from Greater Anglia, to Transport for London and thus we needed assistance from a different service provider. We did this and found out that the Jubilee line has step-free access at Stratford and Canada Water (our next stop).

And so we got the next train to Canada Water. This was the easiest part of the journey in terms of getting on and off trains. The noise of the underground though, is something I’d forgotten, it is incredibly loud, especially with the windows of the train open (a requirement when it was a warm day!). But we survived and got to Canada Water fine.

We got directions at Canada Water to the platform we needed for the London Overground to get to Denmark Hill. However there was no mention of needing assistance. Given that the trains at Canada Water were level access we didn’t think much of it. However on arriving at Denmark Hill we were greeted by a step and a gap, and no staff. So again, Dad bumped me down the gap in my wheelchair and we headed towards the lift. Only to find it was out of order!

With no visible staff present, and commuters blocking access to the help button that is available on the platform we decided I would have to get out of the chair and climb the massive staircase to the exit.

A lovely member of the public offered to help us, and despite my Dad’s protestations insisted on helping him carry my wheelchair up the stairs. Following behind me as I slowly made my way up the steps using a crutch and the hand rail. I felt ever so guilty knowing this kind person helping us was having to climb the stairs ever so slowly because of me (My Dad would not go ahead of me so he could always grab me if I stumbled). Eventually we reached the top and said a huge thank you to the person who had helped us, assuring them we would be okay from now on.

Only to turn the corner and be faced with another lot of stairs! Not as many but still at least 10. And so off we went again. This time with a different member of the public insisting on helping my Dad carry the wheelchair as I slowly made my way up the stairs ahead of them.

Barely an hour after arriving at Denmark Hill we were back at the station preparing for the journey home, having had a bit of a wander, a McDonalds and found out my appointment had been cancelled.

We asked at the ticket office about which platform we needed to be on and assistance, found out and got a working lift to the platform! We were met by a member of staff with the ramp and we chatted while waiting for the train. They were surprised we had come through the station that morning as they had known there was assistance booked when they discovered the lift wasn’t working that morning. They had phoned Canada Water to let them know of the issue and we should have been given a different route. But not to worry, these things are sent to try us right?

We were helped onto the train, and things went well from there to Canada Water, and then on to Stratford where it was all step-free access.

At Stratford things became a bit complicated again; we had to find someone on the platform from Greater Anglia to organise assistance as obviously we were changing train operators again. This wasn’t too difficult although the closer we got to the end of the platform without seeing anyone, the more worried we got!

But we found someone, who kindly told us to wait where we were and she would arrange the assistance for us. And to be fair she did; another staff member came out with ramps and helped us onto the next train.

Unfortunately not in a wheelchair space, but instead just in the doorway by the entrance to First Class. Whether there were no wheelchair spaces available I don’t know, what I do know was that I spent every stop between Stratford and Chelmsford scared of being knocked as people bustled past on their way out of the train. Despite having the brakes on, I was still worried my wheelchair could be knocked out of the train. But the only other place I could possibly go would potentially block the aisle.

But we made it to Chelmsford without a hitch, although we suspected something was wrong when a person from Greater Anglia approached our carriage without a ramp and started by saying “We’re terribly sorry….” Well the lift on that platform wasn’t working, and so they sent us on to the next accessible station (with working lifts!) so we could double back to Shenfield. Now we couldn’t work out why we were told Shenfield which is a few stops past Chelmsford the way we’d just come, but as the train was preparing to depart again we just agreed and figured we’d sort it out when we got to the next station!

By this point all we wanted to do was get home. It had been a long day, although it was only about 2:45pm, the fact that all of this travelling had been absolutely pointless meant we just wanted it to all be over.

So on we went for a few more stops, only to find there was no assistance at our carriage when we arrived; my Dad bumped me down the step again and we found the person who was supposed to have provided assistance, to be met with what was becoming a familiar story “They told us to expect you but not where you were on the train”.

They directed us to the lifts, so we could get to the other platform and we found a lovely member of staff to explain the situation to. He’d already been told to expect us and that we were heading back to Shenfield, when we said actually we want to get to home to Chelmsford, we have no idea why they want to send us back to Shenfield he got on the phone to check the lift on the opposite platform at Chelmsford was operational. It was!

So we had a nice chat with him on the platform while waiting for the next train, and he got us on the train, in a wheelchair space with no problems at all. And when we finally reached Chelmsford again, there was a person with a ramp waiting outside the train for us so we could get off without any trouble! And the lift was working, so we could finally do the final 15 minute walk (wheel) home form the station!

Overall I wouldn’t say our experience was a bad one; it could have been a whole lot worse. However I do think communication between the stations needs to be improved, as does communication to the person travelling. I mean on arriving at Stratford to find no assistance we literally had no idea what we should do, should we wait and see if the assistance would arrive or would the train just leave without us? There was a lack of information available and although there are buttons on the train to contact the train driver, they are covered in labels warning about fines for misuse; would pressing it to tell the driver we wanted to get off the train but were waiting for assistance constitute misuse?! We didn’t know.

If communication between the stations had been better, the stations we were travelling to would have known where we were on the train and been waiting for us with the ramp; this happened on the way home between Stratford and Chelmsford (although they didn’t have a ramp because of the lift problem), and then between Witham and Chelmsford on our little loop back, but otherwise it seems to be quite a big problem.

Also finding the help or a person who can organise the assistance can be quite difficult. As I say although we asked a member of staff for directions at Canada Water and mentioned our assistance that was booked they just guided us to the appropriate platform. In hindsight it seems we should have sought out a help desk or similar rather than asking a member of staff we found on the platform, but even then they could have directed us to the appropriate place to organise the assistance needed at Denmark Hill.

I have to say it isn’t a journey I’m looking forward to repeating, I might not have to if I can get hospital transport now I’ve been given the details to arrange it, but if I have to travel to London, or anywhere, in my wheelchair again, I suspect it will be another nervewracking experience.

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