Losing my mobility and Independence because of Ehlers-Danlos 🦓

Thank you for taking the time to read the following, and come along my journey with me. 💖🦓

We live in the beautiful Bay of Plenty (Tauranga) and just love to get out amoungst the beautiful outdoors. My self, my partner and our beautiful 11 year old daughter. As well as boo our 10 year old neopolitain mastiff boo.

But are (and have been slowly more each year) experiencing the restrictions of my body due to the deterioration of my body.

Hypermobile ehlers-danlos syndrome is a Rare connective tissue disorder (one of the more common among heritable connective tissue disorders).

Connective tissue is essentially the "glue" that the body uses to provide elasticity and strength; normal connective tissue holds strong proteins that allow the tissue to be stretched but not beyond it's normal limit,and safely returns that tissue to normal.

Connective tissue is found throughout the body: muscles, tendons, ligaments, blood vessels, organs,skin, eyes and gums. A major problem with'faulty' connective tissue is that the ligaments are too lax to hold joints correctly in place and they may dislocate, or subluxate. The muscles are then forced to work harder to compensate which causes muscle spasms and trigger points.

There are many associated disorders, diseases, and syndromes that are not part of the 'diagnostic' criteria. For instance:postural orthostatic tacycardia syndrome, Gynecological issue, Gastrointestinal disorders, pelvic and bladder dysfunction, bowel dysfunction and prolapse. These are, as in my case, detrimental to quality of life.

I suffer from individual diseases and syndromes that are co-morbidities of Ehlers-danlos syndrom. (They all come with many of their own symptoms)

- Obstructive Sleep Apnea,(i use a cpap, oxygen machine when i sleep or am experiencing air hunger or pots symptoms)

- POTS (postural orthostatcic tachycardia syndrome,).

- Dysautonomia (autonomic nervous system is faulty).

- Endometriosis

- Adenomyosis

- Fibromyalgia,

- Chronic inflammatory disease

- C.F.S (chronic fatigue syndrome)

- M.C.A.S(mast cell activation syndrome)

- PCOS (poly cystic ovary syndrome)

- CPTSD (complex post traumatic stress disorder)

- Small fibre neuropathy

- GI issues and ibs

- B-12 and B Vitamin deficiency

- Extreme Dehydration and Absorbing issues

- Gallbladder removed due to many stones.

Symptoms i have include:

- Joint sublaxations and dislocations.

- Mucsculoskeletal aches,pains,cramps and spams.

- Tacycardia (heart racing even when sitting relaxed which can make me dizzy even whilst sitting or laying down).

- Prescynope.(pre-fainting symptoms: black spots and blurry vision, nausea, dizzyness and body weakness).

- Light, Sound and Smell sensitivities causing migraines, headaches and vision pain and issues being able to look at even dim lighting when in a "flair".my mast cells are activated when "flaring").

- Upper and Lower Abdominal pain, bloating,swelling, cramping, and spasms.

- Onset high fevers and temperature.

- Sun sick after being out for more than 20 or so minutes. (Like heat stroke after a day in the sun, I have a headache, feel neauseas, washed out, exhausted and my body is weak and drained).

- Constant Internal viruses, viral and bacterial infections (mostly of unexplained origin).

- Major leg and Back pain causing moving and walking at the end of each day near on impossible.(my ones want to physically give out beneath me,my lower back is stiff and achy, my shoulder blades and neck is aching, cramping and unstable which brings on tension headaches).

- Bowel pain,(Bloating,aching,cramping,poping,gurgling, causeing me to if severe enough to sweat water, and sometimes results in me spewing up due to the cramping).

- I vomit at least once a day most often than not.

- Chronic Fatigue (is so bad I fall asleep watching tv,being in a car too long or sitting idle for more than 10 minutes in the quiet)

- "Brain fog" (my memory is very poor, I forget Even the most important things, if not reminded the day before an appointment by text I'm likely to completely forget until messaged or called as to why I did not turn up ).

I also have complex post traumatic stress disorder, from childhood sexual abuse. Dealing with both physical illnesess and mental trauma/health, makes for some one who can't but would give anything to have a job and be apart of my community and lead a normal life. Now I know that this is not possible I need to rearrange my thoughts and figure what I can do.

We are now having to make adaptations and they are turning out to be very costly. On top of trying to still live and pay billson time (in our ever increasing expensive country)

Things are abit dificult at this moment as i am needing:

- Mobility aids(wheelchair, walker,decent non slip cane),

- Orthopedic Bed, (electrical bed)

- Compression garments, braces for my joints that subluxate (partially dislocate) which are my hips, knees, ankles, shoulders, wrist.

- Shower chair

- My fingers dislocate easily which requires ring splints to keep them in place.(metal ring splints are quite expensive).

-A Pulse Oxymeter.(to check my blood pressure during flares of eds an/or P.O.T.S

-Heating and Cooling mats(depending on the weather, pain,and fevers).

-First aid equipment & bandaging/strapping equipment).

- Nordic walker/exercise walker. (To keep my muscles gaining and keeping strength to support my joints and ligaments)

- House access equipment that is portable for when you have to move house or stay some where if Iam having to use the chair or Walker).

- Electric reclining chair.

This will be to get me to all my appointments with variois health providers and places including: my doctor for fortnightly B-12 injections and general observation check up, specialist in whakatane for prolotherapy treatment(injections into joints, that will be coming up at some point through this journey) , hospital, chemist, school runs, therapy and so much more

I've had to swallow my pride and create this page, to help my little family make it through these big costs and changes.

Once again thank you for taking time out of your day to read this and i thank you from the bottom of my heart if you choose to help me and my beautiful little family get through this. We're still so young and want to live the best life we can.even if it's a different one 💖🦓😔