The Stresses of going to University for a Chronically Sick Mum!

I did it!  I survived the week in which the eldest child moved home and the middle one left.  Of course I have to point out that these are not sweet little children any more, but big, hairy men of 21 and 18 who have gathered the clutter of young adult life.

The eldest decided that it will be more cost effective to live at home for his fourth and final year, after paying the high costs of central London living for the past three years.  At the moment I am undecided who is going to find his return home hardest, him or us! His sister was distraught to find he was coming back – she thought that she would be free of both brothers….not one going and one returning!  Her plans to spread the art studio into his bedroom have been thwarted.  He has lived with the bright lights for three years, with only himself to consider (well, and the odd flatmate), whilst we have got used to having a spare room, a varied diet and no concerns about what time he is rolling out of London’s night spots, because out of sight out of mind, right?!

Stresses of Uni

He has already created havoc by deciding to decorate his room before moving back into it – but this has involved emptying said room onto the landing and then moving his flat contents back into the house, which are of course in the hall!  We cannot move for cases and computers and furniture.  So when son number two should have been packing up ready for his imminent departure do you think we could find empty cases?  Actually I don’t know why I am saying “we” as it was very much “I” – if it had all been left to him I’m not sure he would be there now!

This morning on waking with pain and fatigue running through everything, yes even my teeth, I concluded that this going off and coming back from university is pretty stressful.  “But it’s not even you, Mum!” each boy will shout at me, with no understanding that for me the decision to use up all my physical and mental resources, or spoons as we chronic community say, to ensure they are safe and sorted is a no brainer.  The journey from south London to Nottingham was hideous on Friday – there was an accident on the motorway needing an air ambulance, a huge detour and then arrival in the city at rush hour.  The B&B that I had booked, whilst fantastic in that we had a self contained flatlet, proved to be on a nightmare hill and in a huge Victorian house…and you guessed it our apartment was in the basement.  Not for the physically challenged – I needed my wheels by the time we got there – and also not for those trying to adjust to a brand new pair of varifocal specs.  So our arrival in Nottingham saw hubby in his new specs (he has never worn glasses before) trying to help me with my completely dead leg and back pain down a set of wet steps, whilst asking “Are these steps tilting to the side? I think they are at a funny angle”. NO!! It is your brain trying to adjust to new specs, but you are about to drop me…..

DKe2_IbXoAE_Bld

Anyway we deposited the politics student (more nervous than he would admit) to his new home yesterday morning and spent a couple of hours on the very hilly, but very beautiful University of Nottingham campus.  At lunchtime the canteens and coffee shops were full of anxious looking parents and equally anxious, but embarrassed IMG_1385

new students – my son commented that no one had managed to break free of the parents yet! Charming!! The funny thing is that it seems like only yesterday that my parents were dropping me at the nurses’ home where I would live for several years, and I can still remember that feeling of panic that I wouldn’t know who to talk to or where to go.  So it was with some relief that, having told our boy to leave his door open so that he could say hello to flat mates, he informed his brother over messenger last night that he was in the pub with his flatmates.

I can’t believe I am saying this, and I expect I will contradict myself over the next 3 years, but the pain, gastric problems, increased POTS symptoms and body consuming fatigue today, have all been worth it to hear him say “Mum, I can’t talk now, I’m going to the bar with new friends”!

IMG_1384

Don’t tell him, but I’m actually a very proud mum!

Advertisements

For EDS Awareness month from Sunshine & Spoons “What It’s Like To Be A Kid With Ehlers Danlos Syndrome” – including mine!

Another great post for Ehlers Danlos Awareness month, this time from Hannah at Sunshine and Spoons blog.  As a child growing up with aches and pains, dislocations, sprains, dizzy spells, clumsiness, migraines, circulation problems….it really was just how life was as no one even thought to join the dots, let alone consider a syndrome that might be responsible.  I never even heard the name “Ehlers Danlos” until my late 30s – although Marfans was mentioned to me aged 20.

I do know about EDS now and have made it my business to as so many with rare illnesses need to.  The result has been that I recognise my kids are growing up symptomatic – although getting a diagnosis is proving difficult as referrals are pushed from the desk of one consultant to another – and understanding that not everyone has pain daily, struggles to keep up with hand writing in class, is constantly twisting an ankle or popping a joint.  One son is living with severe migraines for which we seem to be in a constant loop of changing medication to bring some control as he is about to sit his A level exams.  His long neck gives him daily pain and undoubtedly contributes to his migraines.  My daughter, aged 14, has dislocations, daily joint pain, dizzy spells, writing problems…..the eldest, the student engineer aged 21, is hypermobile, has a sternal “deformity”, clumsiness, dizzy spells – sound familiar?? All three, whilst very bright, suffer massive anxiety to such an extent that over recent years we have visited CAMHS, Heads Together, use of anti depressants and mindfulness techniques.  I feel a whole post coming on…..being the age they are, mum has not been able to pin them down for a quote as I write this!!

File_000 (20)

My younger 2 zebras and me!

So without further ado let me introduce some great children who have spoken to Hannah:

This post may be a little hard for you to read. I know I had tears in my eyes more than once while typing this up.

If you’ve been hanging around Sunshine and Spoons for very long, you know that at least 3 of my 4 kids have Ehlers Danlos Syndrome, which they inherited from me. Davy (3) and Nano (7) don’t really understand it yet, but Katie (9) does. She goes back and forth between being proud of being a zebra to asking why God would make her have EDS and all of the pain that goes along with it.

Kids are supposed to be able to run and play. They shouldn’t have to deal with chronic pain and fatigue. They shouldn’t have to spend their childhoods at doctors’ offices, wearing braces and explaining random bruises.

But, that’s not how things always work. I interviewed 25 kids who have EDS to see what it’s really like to be a child or young person with the disorder. “

What it's like to be a kids with Ehlers Danlos Syndrome

 

For the remainder of the post and the children’s quotes please click on the following link

What It’s Like To be a Kid with Ehlers Danlos Syndrome