Hello and Welcome to this Blog about how José and I are learning to conquer Tetraplegia (paralysis of all four limbs). Following José'...

Thursday, 8 September 2016

Lessons Learnt - Tips for the Newly Injured

Before I forget all of the lessons that we learnt I thought I'd share some bits and bobs that might be useful for others who are newly diagnosed. 

A very satisfying word to utter with vehemence when company prohibits other F words.  Sometimes there's nothing else for it but to tell life to Football. 

Think outside of the box and don't be restricted by what's currently on the market.

Simple things like blowing your nose for example, if you don't have the lung power to clear your nose how do you remove the 'blockages'? José liked cotton buds, but carrying cotton buds usually ends up with the pack splitting open, and the buds getting covered in crumbs/ dirt/ fluff that has accumulated in the bottom of the bag. Enter the old spice jar - your standard little pot of herbs or spices (probably best to avoid the fiery hot chillies) once washed out is the perfect size for cotton buds. 

Straws: Every time we stopped for a drink we'd need a straw. A pub would often have one but restaurants, take aways or friends would struggle. Rather than routing around for a squashed one in the bottom of the bag we had a toothbrush holder - the long plastic kind sold to travellers. Perfect for straws. 

Dog Training / Playing: Bradley is very food orientated and would only listen to José (well anyone really) when food was involved. We wanted a way they could play together, Master and Dog. Aunty Nanu came up with the brilliant idea of the pea shooter. One Internet purchase later and we were in the local pet shop asking if they had any biscuits the right size (I insisted on José accompanying me on this shopping trip or I would have just sounded weired!). 

José was encouraged to get a car on the Motability Scheme. But the choices were limited. José wanted to sit in the front, not the back and wanted room for me, a carer and the dog. The new cars on Motability wouldn't give us this, so we shopped around until we found a second hand one - giving us the benefit of an asset too. The Motability Scheme uses your PIP benefit, but you can take this money and use it to pay off any monthly repayments. 

Thinking Ahead
When it came to discharge we were told José would have 10 days medication sent home with him, and that he'd get free prescriptions. What we weren't told was how to get the free prescriptions. It isn't automatic, and is a form that needs to be completed by a doctor. It took a few weeks for this to come through and could've been done in the hospital. If it hadn't been for an understanding chemist we could've spent £100 in prescription charges just in the first week. 

The hospital helped with benefits but it's definitely worth applying for everything you can as soon as possible because it all takes time. As well as the free prescriptions we had a reduction in council tax, blue badge parking, reduced taxi fares, local borough disabled discount card and free travel on public transport (for José but not his carer). 

Setting Priorities
One of the first things we did when we finally had time together was to map out José's priorities as a man not a patient. You'll find that every doctor, therapist and well meaning visitor will have their opinion and after months of being a patient you've forgotten how to set your own priorities. We divided life in to Home, Social, Physical and Work - chosen by José in that order. We then wrote down keywords for each section and made a rudimentary poster that we reviewed regularly. It helped us both retain focus and track progress. 

Be Strong
Don't be afraid to say when something doesn't work. The devil you know is never better. This is particularly true when it comes to the care package. We by no means had found the solution and were still looking for the right carers and an appropriate number of hours of care. But what we had found was the right carer made an immeasurable difference to both of us. If José lacked confidence in his carer my work day would be punctuated with emails and calls asking questions about where something was or when it was happening. With the right carer I'd return to them cooking dinner having been out for the day. The best thing we did was to learn to ignore the agency requests to give another chance, it never worked, and to listen to our guts saying this isn't the right carer for us. 

Buy Loo Roll. 
In Bulk. Seriously, I don't know what happens to it but José had rolls in his room (each fresh carer seemed to need to start a new roll) and we still got through over a roll a day in the bathroom.  We always ran out of loo roll. 

And finally; live, love and laugh. Be honest and true to the person you always were and always will be. Life is hard but it's not impossible.


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