Auto immune arthritis is a hefty beast to tame. In actual fact it rarely is tamed but we and our medical teams do our best to make it take annual leave. We can have mini flares in the morning or afternoon where one feels like we have done an extensive pub crawl, headaches, flu and our bodies become as stiff as a stick of rock! I actually have to be manoeuvred, like a lump of steel, out of bed by my husband in the morning as I do not bend in the middle, meanwhile my husband also does not bend in the middle but has long arms to haul me with,occasionally my assistant dog is called on to help, I feel like the enormous turnip! It is amusing game of statues getting dressed for the day in our bedroom at 6am! My best party game was always musical statues, I always won it as a child, I can understand now why!
We both have a nuclear war drawer of medication of stashed away meds for a rainy day! We have at least sixteen boxes of Tramadol between us, eight boxes of two different kinds of oral steroids, Prednisolone and Deflazacourt, umpteen packets of codeine phosphate and its accompanying friend Ducolax! Somewhere also lurks Trimethroprin as my arthritis has attacked my kidneys since I was aged six, Omeprazole for the anti inflammatory ,Indomethacin, that occasionally eats my stomach lining. Amoxocillin is there too because my husband and I both take anti tnf and as soon as our son gets a sniffle my husband gets a full blown hospitalising chest infection. We also all have surgical masks to wear all day when someone in our household is ill! Three bottles of Calpol, a box of teething granules,several hand,neck,ankle and knee splints that I should wear but don't because they are impractical with a child who wants to paint, needs a nappy changed or wants to squash blue play doh into the interesting looking plastic pattern of a gauntlet.If there is ever a nuclear war we have the best Pharmacist right at home!
|My drug drawer!|
On a serious note we stock up all these medications because frankly going out regularly to a chemist to get yet another prescription is a huge military exercise for my family. I am the only driver in the household as my husbands bones in his feet have collapsed which sends his right leg numb. I can only walk a couple of steps so my husband has to come along to push me in my wheelchair as there are rarely blue badge spaces available these days.I have not grown properly due to steroid treatment since 15 months old and am fairy like so I can not drive an electric wheelchair as the size of car that would be required for me to take such a beast and my helper dog and my son,would be huge and I know I would struggle.This means my son also has to come along which means balancing him on my lap and my poor husband with his awful shoulders pushing us both! My husband is looking like Popeye these days. Having lots of medication in means far less of this hassle,planning ahead for busy festive times means even less hassle, no one with arthritis should be venturing out in ice and snow.
Hospital appointments are a saga! Having grown up with hospital visits and long stays as an in patient I am the Survival guide to the waiting room.We keep a bag packed with toddler and adult items for such trips, many of my appointments are miles away at out of county specialist centres so if a bag is packed in the evening it is one less thing to do in the general caous of getting every one ready to go out. The bag contains:
3 nappy bags
1 small packet of travel wipes as we have to keep the bag as light as possible for us.
1 charged Kindle Fire HD with "Not Now Bernard" book (sons favourite) on it along with some Nick Sharatt favourite stories. Some toddler games- "Duck Duck Moose" make some fantastic toddler apps for apple and android. To entertain mummy and daddy we have Chicken Ninja (only on android) and Temple Run app on apple and android, don't knock it till you have tried it people! I can not stress enough how important these gadgets are to a disabled parent that has regular hospital appointments in his or her life or indeed for a disabled child. To have an entertainment system that sits in a small changing bag is a godsend! When I was a child my mother had to lug in a small suitcase of books and toys to look at whilst we waited to see doctors, occupational therapists, leg brace guy, some bloke who tried to get mum to accept I needed a wheelchair where she politely told him his advice was potentially damaging to children with juvenile arthritis and we marched rather quickly out again at a rate my legs were struggling to keep up but it was exercise!
1 Pepper Pig colouring kit from The Range, a perfect pocket sized colouring book with small crayons.
1 blank note pad for free drawing for my son
1 small blanket to lay out on the car back seat to make an easy height changing table for me and husband to change son in.
1 sippy cup, a basics one from Sainsburys as I can rip the lid of using my mouth, tommie tippie is great when they are learning to use a sippy cup but good luck trying to get the lid unscrewed of those, I just couldn't with my child size, poor grip and dexterity hands. So I preferred to use the basics cup and just sit with my son and teach him how to use it, explaining that shaking it around was not a sensible idea. Heck if the 1970s had these basic cups and managed why can't we!?!
1 fruit shoot, yes we know sugary drinks are naughty but they are accessible. You can pull the lid off the bottle with teeth, pull the sports cap up with teeth and placing the bottle on lap,better still a table or chair arm,and zippy cup underneath bottle cap you can push with elbow on the bottle and juice will flow into the cup, I know you could take the whole top off but my hands can not do this. Another alternative is to fill up a basics zippy cup with water or juice at home and carry it in your cup holder in your car.
3 Humzingers- soft sticks of awesomeness, all made of pure fruit so we are not giving him rubbish but the wrappers are tricky to open with poor dexterity so don't forget some scissors in the bag too.
1 packet of tuc cheese biscuits
2 packets of Organics carrot stick crisps.
It is a hospital visit, we don't try and stick with healthy eating on these rubbish days, if my son won't eat lettuce sandwiches at home he will kick up a fuss in a waiting room full of people.
1 Bumble bee back pack and harness system so my son can walk if needed but be kept safe! Only used in a waiting room in moments of desperation.
That list all sounds similar to The Hungary Catterpillar- effectively toddlers are like this! They need a lot of everything. Don't over load the bag because if you have to lug it around or hold on the back of a buggy or wheelchair and orchestrate a child safely around the premises you need to have every last bit of your physical capacity available.
Do not take toys, other patients are in pain and do not need a child zooming around their feet.If like me you can not bend down to pick a child up from the floor then don't have things that encourage them to be on the floor.
Hospitals are new for little children to explore, it is vital we get seated quickly with entertainment and snacks quickly offered, if I was two I am sure I would find a nurse buzzer exciting and an old ladies tapestry bag fascinating.
Today is another hospital visit to see my rheumatologist. Since having Christopher some of my joints need a lot of attention and I seem to be in a flare. However with a child all these things pale into insignificance, just a daily chore that one has to adapt to and work around, we have no choice. Parents with disabilities have to go out shopping as soon as milk or nappies run low, it doesn't matter how ill we feel! If the blue badge spaces are taken up, we just have to go and face the consequences on our joints later. If we wake up feeling awful it doesn't matter, there is a small person needing you and who didn't ask to be born so should never have to suffer just because you are, however ill we are, whatever is going on we have to get up, do painting with them which takes ten minuets to set up and an hour to clean up,read countless books,sing many songs with loads of actions to the lyrics.
I want normality for my family, myself but most of all my child. I need help, I accept that, I am seeking direct payments to become an employer and choose the care I need but this will be a slow process in terms of being awarded them in this financially strapped climate.
Disabled parents, where there is a will there is always a way. So many of us never thought we would ever be well enough, able enough to have a baby, yet here we are! Hospital appointments become a breeze but always have a bag packed the night before because if you are anything like us it takes us an hour to dress ourselves, husband helps me but it takes him a good forty minuets to get himself ready to help. It then takes another thirty minuets to get your child changed and dressed and the NHS have a habit of making hospital appointments for severely disabled people at 8am in the morning for out of county appointments, ahhhh British infrastructure, there to give us a challenge which we all rise to regularly!
On a last note, we brought a deal from Groupon for three Mess around sessions for our little man.I will let parents know how it went but it promises every thing I want, my little chap having physical play and a messy happy time with compost,water,sand and goo, above all he will be with others his age and there will be no setting up and more to the point cleaning up these activities at home,happy days! Take a look at Mess around site for more information: