A week of ups and downs

We lost an electrician, just when we'd set a date to move in. All the wiring is done, but we have no lights in the kitchen, dining, lounge or hall and no hob or oven wired up ..... a seaming mis understanding, apparently he told Mark he wasn't available for some weeks after his holiday but Mark doesn't remember that, he didn't tell me that but what can you do ????? suddenly it was looking like we might have to move the moving date only a few days after we had set it.

'The man from the Council' .....

Mark challenged the 'man from the council' about the underfloor heating in the wetroom and I really didn't think he would change his mind. What I hadn't figured on was his ability to resist Mark when Mark got in full flow. Sure enough he's agreed to speak to the contractors about putting it in. I stand corrected!!!!

This evening we met a new electrician, a young guy working hard to build his own business, taking time out to continue training with the constant changes in regulations .... he's our saviour this week. Recommended by our plumber, he came and had a look at our half finished job, didn't make a fuss about anything, happy to finish off the job for us, which many wouldn't have done, so we're extremely pleased that moving date .... June 25th .... is still on. Scary!!

Tonight Mark is poorly, am sitting waiting for the emergency Doctor to arrive.  I had a phone call from the emergency services saying it could be 3 hours before they arrive ... it's 23.55 now.  It's going to be a long night.

Little victories and frustrations

First little victory, we didn't have to fill in reams of forms for the payment for the bed, amazingly just a single page had to be signed and we should get the payment in a couple of weeks.  Second little victory, we've finally got an appointment for Birmingham, it's 10.30 in the morning and we'll have to leave home at 6.30am but at least we've got it. To change it we would have to move it another month on, so we're not doing that.


Victory / Frustration ...... we had a man from the council to come and measure up the ensuite to put the contract out to get it the wet room done. That in itself is great, however their ideas of what's appropriate and ours, in terms of living in the house don't quite meet, so we're having 'discussions'.  I don't doubt that what they put in, apart from where we disagree will be perfectly adequate and I feel it would be better to go with them so if anything goes wrong at any time, I've got an easy point of contact to get it put right. Mark, however, wants to do it his way and make it complicated ..... I know none of you can believe that, can you!! We want underfloor heating in there to keep the place dry as it opens onto the bedroom and there won't be a door on, we don't want the bedroom feeling damp because there's water lying around. Secondly, we wanted to keep a heated towel rail in there, their design didn't include anywhere to hang towels, there's already one there but it's curved and so sticks out too far in the little room and could make it difficult for Mark, but change it for a flush one and it should be fine. But no, they didn't like that idea and wanted to put a larger radiator in the bedroom and we should use that to hang towels on. when I asked if he would be happy to have his towels hanging in the bedroom, he gave way on that and agreed to put one in. He won't budge on the heated floor though, says it can't be done with a vinyl floor, but that's rubbish, they have vinyl floors in hospital and they're heated, so Mark is going to see if he can get him to change his mind on that one. I have a feeling 'the man from the council' won't be persuaded by Mark. I await the outcome on that one, cos he's not happy with their solution for the ramps to the front door either, so I'm expecting 'significant' discussions on that as well.  Just hope Mark doesn't get us thrown off the list for being awkward.


I said Mark was getting a bit better and getting out and about more, creating havoc at the house, but sadly he's had another bout confined to bed. This time, 3 days so far. He's been in so much pain he can't get out, so the appointment at Birmingham can't come soon enough.


House, nearly there, kitchen in, wider doors going on next week and hopefully electrician will also be there early next week to put lights in, then we'll be in!!!!!  Promise lots of piccies next week.

The lastest battle with services for Mark

Time has been marching on and I didn't realise it was so long since I updated the blog. It's a bit manic trying to get the house done. 


Mark has been getting steadily better and spending more time up and getting out and about. His pain levels haven't improved much but they haven't got any worse either. We still haven't heard about an appointment at Birmingham. 


We've been trying for some time to purchase a double bed. One that provides all the functions that Marks hospital bed provides, ie profiling, which just means the back comes up to help him sit up and at the leg end it raises the lowers his legs, but most importantly the overall bed raises up so the carers can adjust it to the right height to help him with dressing etc etc so they're not bending down. If that's not provided they won't come. A bed is classed as a piece of equipment that Mark is entitled to, however they're under no obligation to provide anything other than the skinny hospital bed he now has, which clearly doesn't do anything to help in rehabilitation back to as near as possible normal sleeping arrangements for a couple. (there is one part of me that doesn't see a problem with that, when Mark snores loudly all night hehe, times like those separate houses might be more appropriate!!) Anyway to get this piece of 'equipment' we have to go through Occupational Therapy, however we have to do all the research and work to find such a bed. When we have we're supposed to put that forward for their approval. If they don't approve they won't pay their share. Unsurprisingly when we find a reasonably priced bed with all these functions, and believe me they can get VERY expensive, we're told they wouldn't sanction our choice because it's a divan base the and portable hoist won't go under it. Fair point we said, but we are prepared at our own cost to have good solid feet put on to raise it enough for the hoist to fit under, it's only about four inches after all. At that point they decide they won't actually help us any further by organising the purchase as would normally happen, we have to apply for a Direct Payment to the value of the bed Mark is currently in. The problem is, where and who do we actually apply to for this Direct Payment as it's not normally done. At this point you can see why most people give up trying to get what they're entitled to, the system is made so b****y complicated most people just don't have the energy to keep battling for what they're entitled to.  Even our Social Worker was given the run around trying to help us she's on the 'inside'. But we wouldn't give up, after being pushed from pillar to post, with everyone we talk to saying it's someones else's responsibility we've finally sorted out which of the many grant facilities it comes through and now will probably have to fill in pages and pages of forms before it goes through, but go through it should. We might have a bed by the end of the year!! 


House. Well, we've finished trashing it, and we're working there 6 days a week ..... until a couple of days ago we were working against the clock to get it liveable by the end of May when we were due to have to move out of our little cottage. By a stroke of luck we've had an extension because the people who had booked it at the end of the month have cancelled their booking. Not good for Janet, they need the bookings, but good for us, it gives us a few more weeks to get as much finished as possible.

Mark works out how he's going to move these two big boxes

 ready for the floor to go down

Ramp into the garage and out of the back door is nearly finished

Mark supervising the floor laying

The place will look remarkably different when the floor is finished and apart from not having a kitchen we could move in if we have to.  We're hoping though that the kitchen will go in over the next 2 weeks. I'll just keep painting!!!!

Has he become a control freak at new house????

Oh yes!!  On the days he can make it there he's into everything and countermanding every decision I've made and generally talking the ears off everyone there who is supposed to be working.  Did you expect to hear anything different ... I thought not haha.

On the days he feels ok, which seems to be every other day, he's quite good. On the bad days he spends most of the day in bed. It's obvious they've not got his new meds quite right yet but another visit to Prof Richardson of the Pain Team at BRI might help that. We've asked the Doctor to make a referral, but who knows how long that will take. Still no news yet from Birmingham. He's also wearing a brace round his middle again which seems to give some support to his back and keep the serious problem at bay a little.

Carers did turn up eventually, we're back to the same 'Intake Team' provided directly from Social Services again, which is good because they are good.  I'm happy to go out early and know they'll take care of him. When I do that Janet feeds him lunch then he comes over to the house if he's able. If not he stays in bed.

House is really coming on now, we've finished all the trashing and now putting it back together in it's new form. The alterations have made a massive difference in Marks ability to get around and therefore feel comfortable for him. Got to keep him in control though, he'd spend every penny we have. We need emergency money for times when he might have to go back to hospital and they stop his benefits again. I don't know how they expect anyone with a house and bills to manage, the bills keep coming in even when he's in hospital.

On a lighter note, I had a mini break and had a night away with friends from Lefkas, Paul and Sue. I met them in Stratford on Avon and joined them on a night out at the theatre. Even a little break like that is brill so thanks and hugs to you guys, very much appreciated.

A couple of piccies of the house ....

the kitchen, other than the door way, was a good size for Mark, but the dining room was really small so by the time we put a table and chairs in there Mark couldn't move around it at all ...

now we've opened it up there's plenty of room for Mark to cook ????? 

and move around the dining area

Since those were taken all the new plastering has been done and it's started looking like a house again instead of building site. We still haven't moved on with the grant for wetroom or ramps, but intend moving in anyway and managing the best we can. No matter what peoples needs are it doesn't alter the snails pace of the 'the system'.

Mark home again

It's two weeks since I updated the blog and those two weeks have passed in a blur. We've had the keys to the house and we've spent the last week trashing it, or so it seems when I look at it now. A bit more trashing today and we should be on the putting back together from next week. Hoping to have enough done to move in early May.

Mark has made some progress at Pinderfields, namely he has identified the action that sets off the severe pain, so knows to avoid it, unfortunately that action includes actually pushing his wheelchair, so he has to limit that and will probably have to change his wheels for assisted ones at some point. The Psychologist sent her report to Mr Raza (consultant at Pinders) and it couldn't have been a better slap in the face for him, it stated quite clearly that Marks state of mind was extremely good considering his situation and that it was obvious to her that his problem was medical and not in his head and she strongly advised seeking a second medical opinion because if they didn't get to the bottom of the problem that could cause a longer term negative mental attitude. It couldn't have been better if we'd written it ourselves!!

While he was at BRI he had some of his meds changed, which helped a lot with the associated pain when his back went mad, when he got to Pinders they didn't know most of the new drugs, and this is a dedicated spinal centre!! Although nothing surprises me anymore. So now we're still waiting for hear from Birmingham, that could take months. No carers, even though they've been requested for a week, so it's all down to me now .... I put on weight while Mark was in hospital, all that sitting around doing nothing, but with house decorating and now doing all Marks care I'll be a a bag of bones again in no time.

Now Mark is going to be spending some time at the house, terrorizing everyone who is doing any work and generally behaving like the control freak he is ...... I should be grateful he is up to it .... or should I????????

Moving on in some areas .....

Later in the day that I wrote the blog last week we got notice that our boat had sold. That came with really mixed emotions. Intellectually and logically is was absolutely the right thing to do and we're relieved it went quickly. Emotionally, it was the last nail in the coffin of our old life, it was a serious meltdown point for me and Mark and I were very subdued the next day. We've all made major changes to our lives and sometimes those changes are upsetting, may leave us angry and with some regrets, but the difference is we MADE those choices. When a major change that wasn't our choice is forced upon us it leaves you with a feeling of helplessness, the inability to control so many aspects of your life. You feel like you're at the center of a whirlwind, everything is whizzing around you but you can't grab hold of anything. Now the boat has sold, the physical link with our old life is well and truly broken. The brilliant friends we made have carried us through the trauma and they will stay with us. Going forward .... here's Marks new house ...

now our efforts have to be looking forward, workmen making a mess and paint brushes ... making a home is the new challenge.

Mark is still in Pinderfields, he's spending some time each day up in his chair, but still spending way too much time in bed still in pain. His Consultant has finally written a referral to a consultant in Birmingham, but it could take another week before it actually goes. Nothing moves very quickly in the NHS!! While he is up he has been able to do some exercising in the gym but has to be careful with some movements that set off the severe pain. His consultant still thinks it's in his head we're convinced of that. The Physio's have seen it happen now so they know it's clearly physical not mental. He's fed up not being able to get to the house and get on with things, he's frustrated being constantly in pain and he's angry he can't get on with his life, but amazingly his spirits aren't too bad considering. I don't think I would be handling it as well. Having said that, Mark messaged me this morning saying if it was the other way round he wouldn't be handling things very well and would probably be living in a box!!

A week of mixed feelings

I feel we're having a schizophrenic week. The lows of Mark back in Pinderfields and what should be a high of successfully buying a new house. On almost an hour by hour basis I can feel the satisfaction that we're finally moving on by finding our base to do so and the depression that Marks current problems have set us back. Mark, understandably, is more focused on the set back. The frustration he feels not only with his physical pain, but the real difficulty of dealing with his Consultant who is skeptical that there's anything seriously wrong with him. It's hard enough that you're going through such severe pain, but not having the one person who can do something about it writing you off as having unrealistic expectations is depressing.

Mark started his stay with a very heated discussion with Mr Raza and Mr Raza (in Marks words) threatening to throw him out and have nothing more to do with him. So now that they're at rock bottom in their relationship where do they go from there?? Well it did improve a little with Mr Raza reviewing Marks notes, sending him off for another x-ray of the area that Mark is indicating the pain is coming from and agreeing to sending his notes and scans to the syrinx expert in Birmingham. Mr Raza is still adamant that's not causing the problem, and Mark is now inclined to believe him but he's keen for someone else to look at the problem as a whole and maybe have an alternative view. The x-ray was inconclusive, Mr Raza had a thought that one of the screws in the fixture might be the problem, but none of the scans indicates that. I think the fact that Mr Raza has the spotlight on him by outsiders, has maybe mobilized him to some extent. His behavior still confounds us though, after insisting Mark see a Psychologist he seems reluctant to read her review - is that because really he knows it's not in his head? He is also adamant he doesn't want to speak to the Physios who witnessed and documented one of these attacks while in BRI. It seems collaboration is not a discipline much used in the NHS. Luckily, I use the word not in a positive sense but a practical one, Mark has had one severe onset of this back pain and subsequently spent all yesterday in bed and had a dysreflexia attack during his toileting time. I used the word luckily because we need the professionals at Pinderfields to witness these sudden onsets of severe pain to encourage them to try and get to the bottom of them. Our hopes are that they eventually do just that.

Today I pick up the keys for the new house .... at least getting cracking with some painting and adaptations for Mark gives me something positive to do. On the other hand getting started on anything when Mark is not there to tell me I'm doing it wrong is seriously frustrating him. I'm walking an emotional tightrope and its slowly beginning to sway.

Send positive thoughts to keep the sway under control, she cries!!!

Next week some piccies of new house.