Lost my mojo

[juliebover]

How can I get my mojo back? I'm in pain everyday and feel so tired I just want to sleep. I want to be able to enjoy life again.

[Ann1-74]

Hey Julie, so sorry you feeling 🤮.. Speak to your consultant or GP about this. They may want to do bloods to make sure your Iron or Vit D is not low. You can have a spoon off me x chin up. You can do this xxx

[Legomum]

Would you be able to make it to the London Behçet’s clinic support group meeting? It is this Saturday near Waterloo station, at Festival Hall cafe from 1pm. Sometimes just knowing you are not alone with this rare disease can lift you a bit. Meeting others going through the same thing is such a help. I am trekking to Reading tomorrow to meet a Behçet’s friend coming by train from Wales. Someone who understands the symptoms, the confusion of the invisible rare disease, and parenting with it too plus the juggle of work and mixed feelings of guilt when not working or able. The Behçet’s UK helpline is there for phone support if getting out is hard...plus there are all your online supporters here. I really hope you find some relief from the pain soon and work towards getting that mojo back

[Jaxxi]

Hi Julie

I always get extra-low at this time of year. My joints play up and I feel drained, and I get more ulcers and rashes. All the Christmas shenanigans don’t help. Vitamin D does seem to help with the energy levels, but all I really want to do is hibernate until the spring comes.

Your post doesn’t say if you are having to struggle to keep up with work / family. I have a flexible part time job and kids are all flown, so my challenges might differ from yours. Creativity is my touchstone for feeling connected with life despite being laid low. If I am making or planning, I don’t get that horrible feeling that my life is ebbing away.

Here are some things I do to keep life tolerable while my batteries are recharging...

- Knitting - so much actual fun to be had on Ravelry.

- Writing long letters to elderly rellies.

- Pottering around tweaking little corners of the house.

- Short walks in nature

- Gentle yoga

- Drawing and painting in little sketch books

- Going out to the movies. Sitting can be sore but a dose of ibuprofen first helps.

- Planning all the things I am going to do in the house and garden once I’m more active. Pinterest rocks!

- Holiday planning - this can use up a lot of time if you use Google street view and Air BnB to map out EXACTLY where the nicest places are.

- Online window shopping. I rarely buy, but do enjoy browsing beautiful things like the ultimate light fitting, the most beautiful duvet covers, the loveliest rug. Lovely handmade things on Etsy.

- Simple baking. Not elaborate cakes, but nourishing things like oatcakes and cornbread. A loud timer is a godsend, in case I vapour off for a zizz.

- Watching documentaries - makes me feel more informed, less of a cabbage.

- Sorting and editing photos.

- Luxe baths with essential oils and Epsom salts, hot towels and a cuppa.

Having the internet is such a boon, but I try and use it actively to plot and plan and watch informative things. Endless hours of Facebook and box sets just makes me feel like a lifeless, useless, brainless blob, though Netflix is of course wonderful after a hard day at the office, or if you’re flaring so badly you can’t even think.

Hope that cheeky mojo comes back where it belongs soon!

J

[Ann1-74 in reply to Jaxxi]

Hey Jaxxi, what an informative list of things to do. Screen shot it so I don’t forget! I lol’d so hard (had a ten a moment) at the baking/timer 😂😂 I’ve burnt more then ate! 😳🤫 Thankyou for cheering me up.

[Expectthebest]

Have you had blood work lately? It's possible you are anemic. Low vitamin D level. Or other anomaly. Drink whole milk and eat well. Try medical marijuana. It helps to disconnect from the pain. Start slow. Short walk down the street. Exercise helps give you endorphins. Maybe find a heated indoor pool. The buoyancy is easier on your joints and spine. & will increase your flexibility. For your mind try drawing or painting while listening to music. These are things that have pulled me through some dark days. Be well my friend.

[rooser1]

Hey there- I can only speak from what I did- so you probably will not like this answer but-

SLEEP.

I was easily sleeping 12-15 hours a day. I was fortunate to have my Bf take care of the house things and cooking so all I had to do was go to work and come home and sleep.

For as long as I could remember, all I did was sleep. After one of biggest flares (which was sept to about jan), I still was sleeping to excess. It wasnt until I combined that with: low carb diet as well as decreasing all social obligations (holidays are upon us)- that I started to *slowly* get better.

You will have good days. You will have bad days. The good days will soon outnumber the bad. SLEEP. Drink water. Eat well. You'll get there boop.

XOXO

[juliebover]

Thanks all for your lovely replies. Unfortunately life is a bit stressful at present. I've put my rambling Georgian town house on the market to hopefully move to a more tolerable bungalow. Also have some work deadlines looking and of course getting the Christmas shopping in especially for my daughter. I love doing criss stitch but my hands hurt and I just can't concentrate. I feel like I'm walking through treacle and am fed up of taking so many pills. Unfortunately time spent on Facebook just exacerbates my feeling of watching my life slip away whilst others are having great trips out with family and friends. Feel the stress of needing to be at work too. Xx

[LindsG59 in reply to juliebover]

I've been in that zone a few times but please believe all the people on this site when we say things can and will improve. Is your specialist engaged with your care? If not find another one. There are some amazing doctors and nurses out there. Also be kind to yourself. People love to show off on FB but don't feel you're missing out. You'll be back in the saddle soon and you'll use the good days to do fab stuff. I never sit at home if I'm OK I make the most of it. I'm sure things will look up for you. Xx

[Ann1-74 in reply to juliebover]

Julie I know where you coming from about FaceBook. I came off it for that reason. Couldn’t stand seeing friends avoid me, not inviting me to day out, meals, movies etc. Ppl like us put on Facebook what we want ppl to see & believe that we are strong & dealing with our health problems, when we literally dying in pain & feeling really low. Do online Xmas Shopping, food shop etc. Asda delivery driver will come to your kitchen & put your shopping there. If asked to. I find it helpful. Stay positive. Good luck with planning your move. Hope it all turns out great for you. Enjoy Xmas with your daughter x

[Pinkydxb]

Hi,

It makes me very sad to read this thread, I myself just got back to work today and still battling a lot of skin lesions. I know it can get very tough especially with the pain, I know this sounds annoying but I find that being sad, angry and thinking too much makes my flares worse, that is why I tried to push my limit and do more physical activity to release more endorphins and sweat the stress out. By doing so as well, it forces me to interact more with people although it is hard to always explain my situation and why I'm always sick. I tend to get overly sensitive at times, but I understand that it is hard to understand something that you do not experience.

It is my first-day training Jiu-jitsu again, I am a bit scared how it will be but excited as well. Having something to enjoy and look forward to really help me battle out my daily struggles, it forces me to get up from the bed and start moving. Nowadays I have this goal to create more awareness about our disease, so this pushes me forward.

instagram.com/p/BrLiFQHHhG5...

I know it's hard, but I hope you can find an activity that you can do, to give your mojo back, or simply going out and smelling the fresh air, watching kids play, how people pass their time.

It is unfortunate that life gave us this disease to deal with, that we do not have any control over, but we can control how we live with it, so I hope that you feel well enough to enjoy against all the odds. Live well, kisses.

[juliebover in reply to Pinkydxb]

Thank you. Unfortunately my father has been taken ill and is in hospital so I've had to take time off work which I feel guilty about and the stress has caused a flare of my behcets. Back on steroids which I hate but seems to be the only thing which works. X

[Pinkydxb in reply to juliebover]

I'm sorry about that, I hope your dad gets better. Have you ever heard of alkaline water? It helps me regulate my flares, maybe it's something that can help you. I also concern myself with my diet, I cut off meat and less sugar and gluten. Maybe it's something that you can try while you're off work. Hey, you never know also, maybe you can pick up a new hobby that you can do while home. It always gets better, there is really no way but up when you're already down, right? Hugs and kisses.