Thursday 22 September 2016

Some Days I Just Want to Give Up, Is it me or my illness?

From the ME Association's website (
"The predominant symptom of ME/CFS is usually severe fatigue and malaise following mental or physical activity. The full extent of this exhaustion often becomes apparent only 24 to 48 hours after the activity (assuming, of course, the person was not already in a ‘recovery period’ from a previous activity)."

My Rheumatologist says I have ME. On the above definition I would tend to agree. I have had no zing for weeks now, and each time I try too hard to do something I just end up back in bed.

Is this a choice? Yes, I could slowly and painfully dress and wash and go down stairs, but is spending the day on the sofa any better than being in bed? In bed I have a toilet nearby, no stairs; in bed my laptop is placed on an over bed table with room for my wrist rest; in bed I can lie down and stretch out comfortably when I need to stop (our sofa is too short even for me); in bed I am not on view to the world passing by our sitting room windows.

A month ago the Rheumatologist at the Hallamshire Hospital in Sheffield (OH has to take the day off work to take me there as the round trip is six hours for me on the bus/train), stated that my symptoms, diagnosed as fibromyalgia at Rotherham over six years ago now, could also be interpreted as ME. I wasn't sure how to take this as just changing the name for my problem wasn't going to help me ... or was it?

I also have Crohn's Disease (controlled by drugs and avoidance of triggering foodstuffs) and I have been asthmatic all my life (fairly well controlled except when I have a chest infection). My joints are not arthritic, but I have instability and pain, excessive exercise causes strong to severe pain in my muscles (last year I pulled a shoulder muscle hanging a net curtain, last week I came close to the same amount of pain after picking green beans). It seems that my recurrent knee problems are caused by an "oblique tear in the lateral meniscus" of my right knee (MRI result reported to me by the physio at Barnsley Hospital,  not by the orthopaedic consultant at the Northern General Hospital who discharged me saying there was nothing he could do). I was a Radiographer in a previous career incarnation, I know exactly what a tear in my cartilage can do!

All of this, plus the resultant loss of my social life (I was pitifully grateful when the OH agreed to me tagging along while he delivered CAMRA Good Beer Guide envelopes to far flung pubs, and yet an afternoon trundling around on various buses and only visiting four pubs worked out fine) have undoubtedly made me prone to depression.  I am the kind of person who hates that word! I won't take drugs for this, I can pull myself out of it. Writing this blog has helped me a lot in the past.

Sadly when I am tired little things seem more important, or take on sinister aspects that probably don't exist. Look, I know this ... I am not totally silly! But sometimes the best I can do is curl up and cry.

In the summer (it was June when the problems began but it is still dragging on) I frequently felt like banging my head on the wall when Barnsley Council's Library and IT department refused to listen to what I was saying. Another of my career incarnations was IT, so again I know what I'm talking about here! They installed 'free' wifi in our local library. We had been promised this since the previous November, it was installed in January,  but we weren't allowed to use it until April ('so everyone gets it at once across the borough'). At first we could connect by asking the ladies on the desk for a log in and password, this worked fine most of the time. We could get the History Group desktop computer, their laptop and our own tablets online during our weekly meetings. Very useful for looking stuff up on Ancestry, Find My Past, the CWGC, all kinds of useful historical resources. Then the system was changed at the beginning of June to a log in requiring a mobile phone. Two problems with this: firstly the phone signal in this part of Cudworth is appalling, in our house you have to stand upstairs in the back bedroom to get a signal; secondly, only one of our members regularly has a mobile phone with her. We submitted a complaint asking for the previous,  functional system to be reinstated.

Further problems became apparent as the weeks progressed. If the lady with the mobile, LL, used her phone to get a code so we could log on the group's computer, she could not then use it to get a code for her own laptop, or her iPad. On some days the signal was so poor LL (who is elderly, as are most of the History Group members) had to walk out into the car park to receive the incoming text with the code. What if it was raining? Snowing? Was this really a sensible thing to ask elderly people to do? The codes only lasted 24 hours meaning we had to repeat this rigmarole every week. Finally, in late August, a technician came out to see us. He agreed we needed a permanent connection for our desktop PC, with a password, yes, but controlled in a similar way to the library's public access machines. He agreed the phone signal in the library was very poor, he had to go out of the building himself to get the log in text. This made the system unsuitable for our location, but other than a signal booster he did not know what to suggest to solve this portion of our problem. Since then the wifi has not been working in the library and we have heard nothing back from the IT man. The library is still displaying posters reading,  'Don't Panic We Have Free WiFi'. No, they don't!

I pushed for an event for the History Group around CWGC (Commonwealth War Graves Commission) commemoration and a national project called #LivingMemory. One of our members made a plan of 17 WW1 burials in our local churchyard and created a leaflet with explanations of the CWGC and biographies of the servicemen.  Twenty two people, more than half not members of the History Group, turned up on the day and we had a nice walk around the churchyard.  People said they had learned things they didn't know before, it was very successful. Sadly the local newspaper had reported the event the week before as a service for 41 men who had lost their lives at the Somme. This angered the local priest who asked who was holding a service in his church? The report after the event only appeared in the paper two weeks later following a phone call by our secretary (LL again) to the local reporter. The resultant article did not mention the CWGC or LivingMemory. I am told we can't control the press, but surely after providing a description of the event, a copy of the leaflet, and afterwards a report and five fully captioned photos, I was within my rights to expect an accurate account?

My 22 year old cat died on Tuesday. She had been ill for a while, in fact I frequently blamed her for my disturbed sleep. But I am sensible, she was old, it was time. We gave her peace and dignity at the end. That is more than my father got when he died of cancer five years ago!

Last week a friend emailed me because she felt she had been slighted by another mutual aquaintance, in print, in public. Well, poor judgement and very poor scholarship had been shown I admit, but no personal insult had been directly given. It was much more upsetting to me that a member of the clergy (aren't they meant to be above petty squabbles?) remarked on Sunday that he would have refused to accept a new war memorial to140 fallen First World War servicemen if he'd known it would cause friction. I hope this was a misunderstanding or misinterpretation of the events. Remembering our Fallen, wounded and traumatised servicemen has become very important to me, replacing active CAMRA involvement to a great extent.

Last night I got very indignant about a perceived slight to our Project to Remember these servicemen. I am hoping that today's email will bring an apology or at least a reasonable explanation about why the Barnsley War Memorials Project (not just me, all our volunteers) were not invited to the 'official opening' of Barnsley Museum's 'Stories of the Somme' exhibition. I was told, back in August, just before the actual opening on 24th of that month) that the official event would not be until September so that people who might be away could attend. That seemed reasonable.  I was told, then and yesterday afternoon, that it would be an event for the new Barnsley Museums & Heritage Trust. Again, yes I understand that people who donate cash have to be thanked. What I cannot understand is how a voluntary organisation which happily GAVE vital information to the museum, saving them days of work, worked with them for weeks to ensure the information was accurate, who support the work of the museum and especially the Archives, were not sent just one token invitation to the event? Photos published last night on Twitter show relatives of soldiers featured in the exhibition at the event, they show bored, tired school children not listening to MP Dan Jarvis' speech at the event. The Mayor and our Barnsley Poet Laureate both seemed under the impression it was an actual OPENING (I've been twice and had a good look around since the exhibition opened to the public on 24th August!). The BWMP have been invited to similar events in the past, why could we not attend (without paying) yesterday!?

Am I being silly to let things like this, like the death of my cat, like my disillusionment with my fellow researchers and the established church, like my frustration with our local Council and Museum organisation, like my sadness that I can't attend CAMRA events unless they are suitable for my restrictions, am I being silly to be upset? Or is this all part and parcel of my reduced ability to cope, caused by my illness?

Maybe you can tell me.

1 comment:

Chris Pampling said...

Hiya! You have had a crap time recently and it's OK to feel crap. I do think a letter to the Chron telling them what you've put in this blog about the event and the snub to your organisation is worth doing.

I completely understand about the Chron not being accurate in their reporting. It's just happened to me. In my case, the Chamber of Commerce submitted a press release (which they wrote with input and agreement from me) and photos about the Amethyst Centre back in May. It appeared online at the start of the month and in print this week. Now it's good that it's appeared now because the Centre is celebrating its first birthday - but if it had appeared in the summer I may not be in the financial situation I am now in as the publicity would have brought people in over summer. And as for making stuff up, you should see what they did with the phrase "built to my specification"! I just hope the landlord doesn't see it!

Anyway I shall post more on Facebook for you.