ARTHRITIS/FIBROMYALGIA

Psoriatic Arthritis and fatigue

                I get fatigue with my PsA and my God it kicks my butt. Before I developed it I thought fatigue was just feeling tired. Tired maybe like after a run. Now I know otherwise.

               My fatigue is my constant companion. When I wake I wake exhausted. It doesn't lift at any point during the day. And the slightest activity, even climbing the stairs, totally and utterly drains me for hours. I feel like I am made out of lead and have absolutely no energy.

               Lifestyle adjustments help. I am waiting on the local council to come round and provide gadgets to make household tasks easier. That will limit how much of my daily allotment of energy I am wasting trying to open jars. Rails so getting in and out of the bath and bed aren't incredibily difficult will also help.

             Like a lot of people I am now waiting to be rehoused somewhere where I don't have a spiral staircase to climb to the kitchen. The stairs are now beyond my abilities and at any rate its like climbing Everest for me.

             Right now my diagnosis is still quite fresh so everything is taking time. But the changes should really help me manage my fatigue. 

             When my clinicians teach me more about managing it I will share that information and if you have any tips please share them! This element of PsA is a major pest for sufferers and advice is gratefully appreciated.

 

 

 

Potatoes!!!! (My favourite food!) Will soon be far easier to cook with the gadgets coming our way!

Update! The nice people from occupational health are bringing cool helpful things!

The occupational health assessors came out and saw us and we are getting the following items delivered next week...

 

Two perching stools

A special grippy chopping board that holds things still so you can chop them

Baskets which hold boiling things so you can lift out the things and let the boiling pan cool before you handle it.

A toilet frame

A kettle tipper

A bed rail

 

So yay! Less danger of horrible injury! And these gadgets will make everything less energy intensive. Win!

 

 

Let me out!!!

So. I made myself poor... Or rather I paid for my sanity.

I haven't been out of the house in two months because I can't walk more than ten to fifteen paces due to the pain in my knees and hips. I was going stir crazy. 

So I took every spare penny I had an asked family for a small donation and ordered a wheelchair, in my favourite colours of black and red. It arrives tommorow and my nan who donated will be getting a visit from me immediately.

I want to show her what her donation got and also I desperately want to go out. Like. Desperately.

All the time my PsA was mild I went out often and had fun. I hate being stuck indoors. The things I wanted to do were in line with that. Travel. Go on holiday. I was learning to dance. Now... Now I want to

 

go for a cup of coffee with my wonderful partner

Just have a trundle along the beach and a portion of fresh salty fries in the fresh air

visit my nan

 

Little things. I can't have true independance because I need someone to push me about but I can get some fresh air and socialise. 

I am both extremely excited for it to arrive and sad. Sadglad. Ordering a wheelchair at 38 was not part of my master plan. But I have no choice but to make the best of the situation I am in. I can either resent it or be happy that I will no longer be trapped indoors.

 

I chose to be happy.

 

Judgement

Oh I am worried. I suppose all people who are wheelchair users as opposed to wheelchair bound (there is a difference) feel this way.

 

I can walk ten to fifteen paces on a good day. This means that I need a wheelchair to make it any further than the toilet. But it also means that on occasion in public I will get up out of my chair and hobble a short distance, maybe to go to the bathroom.

I am getting really overly worried about what people will think. A lot of people don't understand that some people who are wheelchair users can stand and even walk a very little way and I bristle inwardly at the thought of strangers who know nothing of my condition or situation judging me a faker or lazy simply because I stood up. 

 

really this is a short public service announcement.

 

Don't judge others simply because they look okay and are in a chair and stand for a moment.

 

 I look fine. Im slim and the years have been kind to me. I look healthy. 

but my immune system is attacking my body and I am always tired and in pain.

 

You simply cannot tell from looking at someone that they are healthy. Thats why we use the term "invisible illness".

 

 

My newest acquisition.

My new wheelchair

It matches my wardrobe and it fits in the boot of a car. Its perfect. I love it. Mostly because I just went out in it and I haven't been out in months! 

 

I plan to buy the following from amazon. 

a wheelchair cosy (a big zip up snug for your lower body and legs)

a drinking bottle system

a tablet holder

a table

If im going to be in this thing I Will do it in style. I intend to be warm,comfortable, entertained and well fed with either smoothie or wine depending on where i am.

 

Positive thinking.

 

I can't think of a name for it. I have asked people on facebook and twitter. I will update this post with the result tommorow.

and

Update! The chair is a he! Toby MK2 

 

My first wheelchair accoutrement! Pimp ma ride!!!!

New handbag!!!

My friend Karina gave me a wheelchair bag!!! Yay!! No more balancing my handbag on my lap while everything falls out!

 

The bag has a shoulder strap, a smalk zipped from compartment and larger rear zippy compartment. The back is covered with a massive velcro flap which attaches over the arm of the chair...so no precarious balancing act required!!!

Soo tired

Painsomnia and Fatigue

I dozed off on the couch early last night as I was so fatigued, then woke up at four am in agony, took a heap of painkillers, then tried to sleep again.

This did not work. I laid in bed in pain listening to my partners snores and after an hour I gave up. Its nine am now and the broken sleep has bothered my bipolar. Now I feel TOO awake and peppy.

I take vitamin B complex for my fatigue and it does help a little. I suppose it would be good for mild fatigue.

This is apparently fibromyalgia (I disagree. this whole issue has a clear starting point and trauma wasn't it) but its my knees that hurt. Not my muscles. I get a bit of muscle pain but then I don't move a lot.

I'm sick of this but rheumatology aren't seeing me again for a year "due to service pressures" so I guess I am stuck using my wheelchair for distances and suffering broken sleep. 

I will now most likely be awake until lunch and then the fatigue will catch up with me and I will pass out wherever I happen to be. Its super annoying because regular sleep is so important to managing bipolar disorder and I can't seem to catch a proper nights sleep!!!